Thursday, March 1, 2012

DSM5 and Ethical Relativism

Relativity applies to physics not ethics.
-Albert Einstein

If you're not sure this is relevant to you, skip down to the P.S. at the bottom. It may change your mind. Then, read and share.

For more than a year, I've been struggling, both professionally and personally, with the proposed changes for the Diagnostic and Statistical Manual 5 (DSM), even writing letters and expressing deep concern to colleagues in the 'mental health' field. Despite an urging from others to speak out, before today, I've remained silent in the hope that reason might find its way into the discussion about grief and the DSM.

The change that most concerns me has to do with the "bereavement exclusion"(BE). In the current manual, the DSM IV, this exclusion means that a person who has suffered the death of a loved one may be diagnosed with Major Depressive Disorder (MDD) no less than two months following the loss. Prior iterations, the DSM III, stated one year.

The new DSM 5, with a planned release date in early 2013, however, has again reduced that prescribed time frame from two months to two weeks, further pathologizing the authentic human experience of sorrow. So, a person may, at the discretion of a psychiatrist, social worker, or psychologist, be categorized as "mentally ill" as soon as two weeks following the death of a loved one. While I don't like or agree with either 'time limit', the arbitrary absurdity of "14-days post-loss-then-becomes-depression-label" has ignited a fire in the pits of my being against the DSM machine.

And I'm not the sole adversary.

This change occurs against a historical DSM backdrop of salient criticism relative to the medicalization of normal human emotion, clinical hubris, cultural incompetence and insensitivity, questionable relationships with pharmaceutical companies, and ethical misuse of such nosological systems.

Supporters of this draconian change tout the logic:  Mourners will be able to get mental health care for grief. Grief can turn to depression, and the depressed need mental health care. Insurance providers will cover services for depression.

Critics are vast and outspoken and profoundly credible.  Allen Frances, M.D., professor emeritus and former chairman of Duke's psychiatry department says this move "reduces the normalcy and dignity of the pain" of loss, and that the DSM 5 will "take psychiatry off a cliff." An editorial published in The Lancet on February 18, 2012 called this move "dangerously simplistic" and "flawed."  They direct physicians to offer "time, compassion, remembrance, and empathy, not pills."

Ah, of course. Pills.  The contentions of the supporters of the DSM 5 are neither convincing nor compelling for me given both my personal and professional experiences; unless, of course, it's about elastic ethics. That is, having a document- what is known euphemistically as the Bible of Psychiatry- which sanctions the use of psychopharmaceuticals as a first line of treatment for bereavement. Though their qualities are often indistinguishable, grief is not depression. There is a difference between endogenous melancholia and reactive sadness. Stephen Diamond's list distinguishing normal grief from Depression (capital "D") is most certainly a Venn diagram. There is so much symptom overlap, however, that most clinicians would encounter great difficulty distinguishing one from the other. Truly, we have become an increasingly intolerant society that is transforming "normal sadness into depressive disorder" (Horwitz & Wakefield, 2007).

The healing from the pain is in the pain. 

And for either state- grief or depression- a pill is a poor substitute (and according to Kirsch et al (2008) not any more efficacious than a well-placed placebo) for human connection, caring, and compassion.  Quite poor actually.  We can never derive what we need during suffering from a pill or a bottle. What we desperately need in our world is a willing witness to our suffering, someone who will join us with full presence and mindfulness. The Lancet editorial captured, beautifully, what it means to be a consummate psychiatrist for the bereaved: time, compassion, remembrance, and empathy.

In fact the word psychiatry comes from two Greek (ψυχιατρική) words: psykhe meaning mind and iatreia meaning healing and caring. In French, the literal translation of psychiatry is a "healing of the soul." A pill will never heal the soul of a person in mourning. Brief, laconic treatments, as the great psychiatrist, Irvin Yalom says, are not best practice for patients. Rather, they are best practice for managed care systems and the psychotropic medication industry which insist on rapid cures for the incurable and place more value on profits than people and relationships.

I don't heal people. I help them be with what is true. 
The healing comes from that.
-Robert Hall, M.D.

Being with what is true hurts. It hurts a great deal. And it takes time to unfold into its own change. Yet, psychiatrists have capitulated to an antithetical system of caring which Yalom calls "inexpensive and perforce, brief, superficial, and insubstantial" and "rather, specializing in psychopharmacological based laconic interventions".  Similarly, Sigmund Freud warned against furor sanandi, the rage to cure. Modern psychiatrists have, more recently, sounded that same alarm only to fall on intransigent ears and hearts. 

Sadly, other mental health professionals who are, in fact, helpers to those suffering but who remain silent become co-conspirators in this social and ethical blunder.

Washing one's hands of the conflict between 
the powerful and the powerless 
means to side with the powerful, 
not to be be neutral.
-Paulo Freire

As a bereaved parent myself, I have one foot in the world of practice, one foot in the world of nonprofits who serve bereaved parents (MISS Foundation, Parents of Murdered Children, Ronan Sean Thompson Foundation, Compassionate Friends, and others), and the other, third foot, in the empirical world of academic research. I've been working with the traumatically bereaved for 16 years. I've been researching them for nine.  I receive an average of 150 emails a day from bereaved parents around the world. Stories of love and loss, sadness and suffering, questioning and longing. People who come to me and ask me to bear witness to their pain.  Some of those emails are also expressions of profound gratitude for "helping me through the darkest time of my life" and "the comfort we received from you saved our family and our lives."

What do I do to help those suffering traumatic death? I have no magic wand, or pill, or words. I am, however, willing to join a person in the abyss and sit with the suffering non judgmentally, without urging him or her toward healing before healing's time has come. I radically accept whatever emotional state presents, even if it means we spend two hours on the floor in silence except for the visceral moaning or sobbing, the primal longing for a person's beloved dead.

It has become appallingly clear that 
our technology has surpassed our humanity.  
-Albert Einstein

We should not, ethically or morally, medicalize grief.  To do so is to medicalize love.  We rarely mourn for that which we do not love. I can only begin to imagine what the sages, and mystics, and shamans of the past might think of a society which does so.  Seems hardly human at all.

And what about the untimely death of a spouse or parent? Or soldiers who have witnessed unspeakable losses in the threshold of violence and atrocity we cannot imagine? There are no exceptions in the DSM for that?  Or what about the death of a baby or child? Of all losses, this one is, time and time again in the literature, clearly distinguishable from so many other losses.

I know from many years of experience that anachronistic, traumatic bereavement is unique. And there remain many misconceptions and overgeneralizations about the bereaved resulting in rather reductionist views:

They say that depressed individuals think of suicide but that the bereaved don't.  Actually, the risk of suicide in bereaved parents is up to 30 times greater than the general population (Qin & Mortenson, 2003). Qin and Mortenson note in their study (n=18,611 and n=372,220) that "losing a child may contribute more than other factors to provoke parents to want to die" (p. 802).  DeFrain and colleagues (1985, 1988) found that between 70-80% of bereaved mothers experienced thoughts of suicide. Both anecdotally and empirically, I know this to be true.

But if the Gaussian curve shows a normal distribution of thoughts, emotions, and behaviors for a certain population that is in stark contradiction with the hegemony of the majority, those outside the relevant population, then what becomes normalized? Reality of the people or the agenda of those with such hegemonic power? In addition, one important study found that only one-half of those with suicidal ideation have a mental disorder (thus buttressing my aforementioned point). The same study also found that, after controlling for psychiatric morbidity, only disorders originating from poor impulse control and anxiety regulation predicted the act of suicide (Nock, Hwang, Sampson, et al, 2009).

Some also assert that the ability to receive consolation is one of the markers between depression and grief. I have some questions about this purported consoling:  What is the quality of the consolation? Who is consoling and how? How do we ensure a bereaved person gets before a "skilled clinician"? What about shame? Guilt? Anger? Trust? Platitudes? Insensitive others? Community? How do those play a role? Far too many variables to operationalize this process, in my opinion.

Just as despair can come only from one human being to another, 
hope, too, can be given to one only by another.
-Elie Wiesel

The word compassion comes from the roots com  meaning "together" and pati meaning "to suffer".  Roshi Joan Halifax says that "compassion is a tenderness of heart in response to suffering".  With compassion in my heart, let me introduce you to some families who have given their permission to share their stories for the purposes of this statement. They are a part of our very sad and grieving-without-bounds community which puts no time limits on an interminable grief, and in my commitment to caring for them, I continue to suffer with them and beside them. These are the people I see everyday, all day long for 16 years, and this is their insufferable reality:

Meet precious Zachary.

His mother, Shawn, nearly died during his traumatic birth. Tragically, Zachary did die during birth. His big brother was waiting patiently for his arrival. His father endured indescribable stress and trauma after Zach's death and almost losing his wife.  Physical recovery has taken more than a year for Shawn. But, the physical recovery is the easy part. Life has changed forever for this family who miss their beloved Zach. Words cannot express their pain and their suffering at this profoundly excruciating loss of a baby who is unspeakably loved.  His place in their family is, simply, irreplaceable.

Meet beautiful Ronan.

Ronan was a gorgeous and "spicy" little boy with a passion for Star Wars and fierce love for his family. He has two big brothers, twins, and parents who love and adore him. When he was just three years old, Ronan was diagnosed with neuroblastoma. His mother and father and brothers were catapulted into a world of suffering beyond any comprehension, enduring treatment after treatment, hospital after hospital, clinging to hope that he would survive. He was enrolled in a clinical trial at one of the "best" hospitals in the nation. When his treatment was not successful and death was imminent, "we were put out into the streets like trash," his mother, Maya, said. Ronan would die soon after with his family by his side, and the excruciating pain, etched into his mother's sad, emerald eyes, is palpable.  There are no words in the English language that can adequately describe the daily struggle of Ro's family. But his mother writes to him in a blog called Rockstar Ronan, and their love is inspiring millions.

Meet darling J.

J. was kinship placed at birth with A., a relative who adopted him and who is full of endless love for him. Sadly, J. was born substance addicted. For three years A. loved and nurtured and adored J.  He was so happy, always smiling, joyful, affectionate, and gentle. J. is A.'s only child.  At the behest of his biological parents, he was sent back to live with them despite A.'s vociferous protestations.  She begged the state not to further traumatize him by taking him from the only home and mother he had ever known. Her pleas went unheard and J. was returned to his parents.  Two years later, J. was brutally beaten to death resulting in a highly publicized media frenzy.  A. misses her little boy every single day and must deal with the grief and rage and injustice surrounding the circumstances of his death.  J. is never far from her mind or her heart.

Meet sweet Mckenna "MBug".

Mckenna's smile lit up even the darkest room.  Her giggle was contagious.  She knew, unquestioningly, how much she was loved. She is Ashley's only child.  And Mckenna was showered with adoration her entire nine months. Ashley was young and going through a difficult divorce. She was moving out of her apartment when she was trying to move the television on her own.  The weight of the television was too much and it slipped through arms. She dropped it not realizing that Mckenna was there in the room with her.  Tragically, the television fell onto Mckenna and she died after being transported to the hospital.  Ashley struggles with regret and pain that not many can imagine.  Mckenna was her entire world. You can see the love between them in photos and videos. The way they look into each other's eyes is magical.  Now, every moment of Ashley's life is filled with longing for and missing MBug. 

Meet the two perfect kids, Katie and Zack.

Katie and Zack Eide are part of a beautiful family of five: Sandie and Mark, their parents, and an older brother.  Katie and Zack were driving on the freeway when a sudden dust storm, a haboob, hit the valley. Katie and Zack were rear-ended by a large truck. They both died in the crash. Their parents are beyond heartbroken, desperately missing two of their three children. Katie was a vegetarian tree-hugger who loved cheesecake and hiked barefoot. Zack was a surfer and charmer whose nickname, Sunshine, fit him perfectly. Sandie dreams of her children often, and Mark has an ennobling way of being with his grief. Nothing in their lives is the same except for the love they hold deep in their hearts for their "kids". Sandie and Mark suffer through each day in the absence of their two beautiful children.

Everyone is an 'expert' in grief until it is he who has it.
-William Shakespeare

Do you - any of you - have the answers these families seek? Can you cure them? Surely, I cannot. And I will not participate in any ruse to do so.  What manual tells you what to do to "console" Shawn, Maya, Katie, Amy, Ashley, Sandie and Mark? Are you, Dr. DSM, prepared to sit before one of these parents two weeks after their unspeakable horrors and tell them they are depressed? And do you actually believe that?

It's relatively easy to entertain multiple possibilities of truth 
and right action if one remains 
a spectator on the sidelines.
-Helen Merrell Lynd

Or what about other parents with whom I've worked?  One whose three children and husband died in a fire? Or one whose 17-year-old daughter was raped and murdered? Or the woman whose two young children were murdered by their father?

Shall I send them off to a psychiatrist to diagnose them with a disease?

There's only one disease expressed in that equation and it isn't on the part of the bereaved. The entire system is a mirror image- a projection, of its own illness and intolerance, denial and delusion. Truly, we live in an insane world when spouses and children and parents, like those above, and other grievers around the world can be diagnosed with Major Depressive Disorder- a mental illness- two weeks following a traumatic death at the behest of someone who has no notion of the reality of their experiences. This feels like the apogee of hubris, exorbitant arrogance.  Too much knowledge and absolutely no wisdom. Too much death avoidance and not enough willingness to approach the ineffable. I see this played out often when I speak of my work and watch others recoil. But - of all the helping professionals- shouldn't a provider of mental health "care" be highly trained and well-prepared to deal with trauma and death?

And, tell me why is it that mourners cannot get help at any time they need it?

If it is because insurance companies refuse to pay for grief counseling then our obligation is to oppose the establishment and not acquiesce to a caustic and fallacious taxonomy which further harms the most vulnerable.

If we are going to cure anything, let's remedy the systemic apathy in an institutional pedagogy unfit to cultivate mindful healers and the insurance providers whose myopic understanding of the human condition, tempered against economic avarice, limits their ability for circumspect.

And why is our ability or willingness to help, as a society, based on time? What makes us think that the two-week bereavement exclusion will allow someone to seek help and that not having such an exclusion will preclude such help? Grief counseling or therapy with a competent provider may help some. But also, what about the role of faith communities? Indigenous healers? Friends? Colleagues? Nonprofits and self-help groups? Neighbors? Even strangers?  We are enabling an environment of human apathy - abdicating our responsibilities to one another and foisting it onto a system -a machinistic system- asking this system to care deeply when it cannot. Instead of abnegating our moral duty to fellow human beings, we should be fostering a society of individuals who care about and for one another. Person-to-person, as in Buber's (1932) concept of I and Thou, Ich and Du.

I am done with great things and great institutions and great success. 
I am for those tiny, molecular moral forces that work 
from individual to individual, creeping through 
the crannies of the world, like so many rootlets, 
or like the capillary oozing of water which, if given time, 
will rend the hardest monuments of pride.
-William James

There are many who can help those who are grieving whether the help is sought weeks, months, or even years following a death.  I once saw a woman whose newborn died in 1967 and she had, in her own words, "tried to bury the pain and the truth" with her baby.  More than thirty years later, she wanted to be able to "die in peace" and so she sought help in confronting the pain that she had deflected for so many years.  Healing communities offer opportunity for deep and meaningful human connection and solidarity. And, thus, for this woman the MISS Foundation was there for her, and provided a place of comfort and solace.

We need not feign mental illness and disease for mourners to seek and receive the kind of help which truly helps.

Never apologize for your feelings. 
When you do so, you apologize for the truth.
-Benjamin Disraeli

I can have no part in this diagnostic charade.  Rather, I will go on, in the spirit of compassion, suffering with the other, in the best way that I can. Ethically, I cannot and will not violate what I know to be real and true and sane and human.

This implacable grief is a result of unyielding love.  If we wish, as a society, to truly help those suffering in the aftermath of loss, then we must make the move toward collective compassionate and open hearts. Systems of "care", HMOs, hospitals, and evidence-based practice manuals will not help heal others.

You cannot rush your way through grief. 
Grief unfolds with the same exquisite timing as the rose, 
left to blossom on its own time, 
until the colors slowly fade 
and the petals fall away
 of their own accord.
-Margaret Brownley

I posit a universal axiom based on reason, and truth, and the wisdom of the ages, not based on ethical relativism: Only people and relationships and moments of deep connection will help heal the hearts of the bereaved.

So, to the DSM committee, should you have chosen to read this missive, what these families experience, hundreds of thousands every year, is not ordinary grief, nor is it Major Depressive Disorder. This is extraordinary grief as a result of extraordinary circumstances. Contrary to your postulations about grief being like many other losses, in general, I can assure you that this is, actually, quite different from other conditions of the human experience. Please, see clearly the truth that lies before you.

The mere title of 'doctor' is no criterion; a real doctor is one who is a true servant.

As for me, I will continue to reassure the families with whom I work that their beloved child is worthy of each and every tear.

Hold the Kleenex. And the relativity.

Why is this a big deal?

For many reasons: 1) Imagine the person you love most in all the world. Picture his or her face, laugh, touch. Now, imagine that you will never see that person again because he, or she, has died. And then imagine that a two-week time limit has been imposed on your sadness, grief, anger, fear, confusion. If you experience such profound distress longer than two weeks, you may be diagnosed with a mental disease.  Reason number one why this matters to you? Because someday, you will feel deep and profound grief that will bring you to your knees. You are not exempt. No one is. Grief, as Anne Morrow Lindbergh says, is "the great leveler"; 2) Because, even if it's morally wrong, a person can be denied private health and life insurance if he or she has been diagnosed with a mental disorder; 3) Because parents who have been diagnosed with a mental disorder can lose custody of their children, and yes, it's happened; 4) Because, whether or not you agree with employer's rights to do so, individuals diagnosed with mental disorders can lose opportunities for jobs and often suffer the effects of global discrimination; 5) Because a diagnosis of a mental disorder stays in your records, despite the fact that many clinicians may not disclose this;  6) Because categorizing normal grief as a mental disorder is a lie and thus is unethical; 7) Because this lie further perpetuates the myths around  'normal' grief and obscures societal understanding, further marginalizing the traumatically bereaved; 8) because such lies harm people and relationships, and 9) many other risks, some known and some yet to be discovered.

What you can do to help? Dr David Elkins emailed me today with a call to action. To my colleagues in the mental health field, please, use your voices:

Dear Joanne,

I read your post earlier this morning on bereavement. Brent Robbins, who is on my committee, sent it to me. It is wonderful. So touching and so human... I'm so glad our paths have crossed. 

Thanks for your article and for referencing our effort. Our petition website has now collected more than 12,000 signatures, plus more than 40 "mental health" organizations have endorsed it, including the British Psychological Society, nearly 50K members, and 14 Divisions of the American Psychological Association. The DSM-5 Reform effort will be the cornerstone of the Division 32, Society for Humanistic Psychology, program at the annual APA conference in Orlando, Florida, this coming August. We have three program events focused on these concerns.

I don't know whether we will have any influence in bringing about substantive changes or not -- but we are doing our best. If you care to give out our petition website link and encourage professionals to read our "open letter" and sign the petition if they agree with it, we would be soooo appreciative. The hot link is:

P.S. Here's a brief you/tube video we did on what we consider to be the "social justice" dimension of the DSM-5 controversy.

More than 65,000 Grievers Must be Heard and Should Be Heeded 

by Allen Frances, MD,


Psychiatric Times

More than 65,000 Grievers Must be Heard and Should Be Heeded  By Allen Frances, MD | March 5, 2012
Of all the misconceived DSM-5 suggestions, the one touching the rawest public nerve is the proposed medicalization of normal grief into a mental disorder. Fierce opposition has provoked two editorials in Lancet, a front page New York Times story, and incredulous articles in more than 100 journals around the world. And now, during just the past few days, there has been the kind of online miracle that is possible only on the internet. Joanne Cacciatore wrote a moving blog that rapidly made its viral way across the world and into the hearts of the bereaved. An astounding 65,000 people have already viewed her piece and then passed it on to friends and families. You can join them at:

Dr Cacciatore is a researcher at Arizona State University and the founder of the MISS Foundation-- a nonprofit organization providing services to grieving families whose children have died or are dying. The MISS Foundation has 77 chapters around the world and website that gets more than one million hits per month.

Dr Cacciatore writes: "Across all cultures, the death of children is a particularly traumatic blow. Most people quaver at the thought of losing a child -- for millions around the world this feared tragedy is reality." "I have long opposed the DSM-5 suggestion to remove the bereavement exclusion, but chose to remain silent because I simply could not believe it had any chance of making it into the final version of the manual. It made no sense that DSM-5 would allow providers to diagnose a serious mental disease-- major depressive disorder-- when people are having nothing more than the perfectly normal symptoms of grief."

"I decided to speak now because it appears almost certain that DSM-5 will actually go forward with this poorly conceived proposal to pathologize the authentic human experience of sorrow. After just two weeks, a grieving person may be categorized as 'mentally ill' at the casual discretion of a psychiatrist, social worker, or psychologist. The arbitrary, rapid-fire absurdity of this '14-days post-loss-becomes-depression' travesty has ignited a fire against the DSM machine in the pit of my being."

"We cannot expect that a family should be functioning as if nothing has happened two weeks after the death of a child. I wonder how many people on that DSM-5 committee have buried or cremated their own child? Shouldn't the relevant community-- those affected by these insulting changes-- have some input?" "I cannot stand silently by and allow this diagnostic charade to find a place in DSM-5. To do so would be unethical and would violate what I know to be real and true and human. Big love means big suffering. And few, if any, relationships are as meaningful and filled with love as that between a parent and child. It badly misses the point and minimizes the experience to treat the death of a child as if the prescription of a pill will cure normal heartache. As Lancet pointed out, the doctor having a compassionate and open heart is much more helpful than jumping to a premature diagnosis."

The 65,000 person (and counting) endorsement of Dr Cacciatore's cri-du-coeur (all within 4 days) is simply staggering and sends the clearest possible message to the American Psychiatric Association. Previously, DSM-5 has brushed off the thoughtful and spirited criticisms, mounted by experts in the field, disputing its interpretation of the literature as it relates to the diagnostic issues involved in grief. DSM-5 has equally shrugged off the criticisms coming from the broader field of medicine-- as expressed in the Lancet. And DSM-5 has responded testily and ineffectually to the unanimous ridicule it has received in the world press. Long ago, the APA should have realized that this suggestion needs a quick and decisive rejection-- instead it turned a blind eye to all previous warnings. Now APA faces a far more serious and undeniable opposition-- a spontaneous revolt by the large community of the bereaved. They soundly reject the DSM-5 proposal and refuse to allow themselves to be misdiagnosed by it. It has now come down to DSM-5 against the world. How long can APA depart from common sense and continue in the folly of medicalizing normal grief? I hope that APA will finally hear Dr Cacciatore's plea and act swiftly on it.

Grief deserves dignity not diagnosis.

There is an Occupy APA movement on May 5th, Saturday, in Philadelphia.


Unknown said...

Infinite amens....I am a trained therapist myself and a twice bereaved mother. These guidelines are at a minimum appalling and ludicrous, as was the previous 2 months post trauma to diagnose MDD. 8 weeks to be done grieving was asenine, 2 weeks is beyond insane. I couldn't come close to saying it all as well as you have. Infinite amens again. Bravo for how you embrace the grieving unconditionally. thank you for your stand and your heart towards all grieving people.

Anonymous said...

I had a sincere, well meaning friend suggest that I was depressed and needed medication a few months after my daughters death. I am not opposed to seeking help for depression when medically necessary of course, but I felt like she was failing to see the reality of my life, my situation. I was grieving, and I needed to feel my loss, not mask it. Thank you for validating all of the grieving parents out there.

- K

Mel said...

Finally, someone is speaking out for bereaved parents. I have worked for 10 years in mental health services. 2 years ago my son Finley died during labour. Despite all of my knowledge as an Occupational Therapist and Life coach, I was in the pits of despair for many weeks. I worked hard to lift myself, drawing on all my skills and support systems. I knew where to go and what to do, a luxury that most parents do not have when such an experience occurs.

I set up Finley's Footprints to be able to share my experiences to improve services, and support parents.

I receive many e mails and messages. The most recent one has scared me, but I know it is only the tip of an iceberg. I was told the sad story of a lady whose baby passed away from SIDS while co sleeping. He was one of twins. Her other baby was taken away from her by social services because of the risk to him of the same thing happening again - e.g. the mother would co sleep. Later her grief process for both babys was used against her. 18 months on and her baby is still not home. If the DSM V reduces the already short exclusion this places many more devastated families at risk of the powers of the mental health act, or the negative impact of a label, given at a time when they are least able to consider the consequences.

I have also worked with parents who have been refused admission to mental health units after over a year post loss, being told that depression is not a mental illness. There needs to be consistency and understanding applied to the interpretation of clinical guidelines like these.

"Normal" grief is thought to take up to two years to resolve. Actually in my work with parents I see that their intense period of grief goes on for many many years.The duration dependent upon many factors, unique to that individual. But it is my belief as a parent without her son, that my grief will continue as long as I am alive. I miss my son and will always miss him. I may learn to live with it, I may learn to smile again but I will always have a space in my heart that is grieving. I do not think that placing a 2 week timespan upon grief is appropriate. the baby would barely be buried then. Giving people antidepressants at this time, to block out or numb the pain is unlikely to be helpful in the long run. It is sticking a plaster over a cut that is still bleeding - some time soon the plaster will come off. At some point the grief needs to be dealt with, and eased, the pain needs to be comforted, the wounds cleaned and new skin allowed time to grow uninterrupted. Support, therapy, information and memories all help and if this guideline means that more therapy becomes available world wide perhaps it is a good thing, but the cynic in me sees drug companies making lots more money out of the increase in people eligible for medicine.

Jessie said...

I don't know what we bereaved parents would do without your strong vision and voice, always advocating and inspiring us. My experience of grief would have been vastly different if it wasn't for you and the MISS Foundation.
Bowing in gratitude,

Ausmerican Housewife - Creating with Kara Davies said...

As a grieving mother of two, AMEN!

There is no fixing the grief and the dailing longing and missing of my children.

There's no fixing the fact that my daughter died in the womb, we'll never know why she died ,and was still born at 17 weeks.

There's no fixing the fact that my son died as a direct result of being born feet first, totally unexpectedly feet first, at home and in the ER. There's no fixing the fact that because his birth was so violent and traumatizing that he was so exhausted that he didn't respond to resuscitation for 15 minutes. There's no fixing the fact that when he did come back after 15 minutes that he was braindead from lack of oxygen to his vital organs. There's no fixing the fact that vaginal birth scares me SHITLESS and that from now on all my future children will be born via c-section.

There's no pill in the WORLD that can fix the grief and missing and loss of my children. No pill or placebo will bring my children back, that will bring back the life I should have had as a mother of two under two.


Diana Doyle said...


Another compelling, honest, informative post from you. I hope the so called experts in the field read this....

I lost my sister, mum and daughter all over a 3 year period to different deaths..the only thing that got me through it all was support, love and other people who were compassionate. And of course the dreaded tears....

Grief is grief is grief...there is no magic pill that will take the pain have to work through it, like you said, "Only people and relationships and moments of deep connection will help heal the hearts of the bereaved."

I don't ever think I will be 'healed' of my grief, especially over losing our 4 year old daughter, I simply embrace the grief when it descends..knowing it will ease.

I shied away from using pills as a good friend told me they just blurred the pain...but when you come off them the pain and grief is still there waiting.

Thank you as always for all that you do for the grieving...especially us parents who no longer have our children here.
with love
Diana x

Amelia's Mom said...

Dear Joanne,

Thank You so much for your empowering words of wisdom. My daughter Amelia was stillborn 11 months ago and I'm one of the people you continuously help through the Miss Foundation, it's my lifeline.

In my short grief experience I found our society to be so afraid of the inevitable, of death, that it chooses to pretend it doesn't exist and that grief doesn't hurt. In reality, grief is work, really hard work and it must be done, otherwise we learn nothing from our experience.

Thank you for speaking out for all of us. I hope to join you in the conversation and fight for the rights of the bereaved in the years to come.

Alena, Amelia's Mom.

Dr. Joanne Cacciatore said...

Thank you all for sharing your thoughts and your feelings here... I wish none of this had to be...

Bug Family said...


As always you have the words when, paradoxically, there are none. Endless thanks for your support, voice, and being a point of light in the darkness. And also to the families who shared their beautiful children and stories, and all who didn't, even though I don't know you personally, I genuinely MISS your children with you. The world will never be the same without them.

Gina, Forever Sweet Baby James' Mom

Anonymous said...


Your words, again, give rational voice to my buried feelings and remind me that it's okay to have them and I can't love my girls as long as my heart wants to hold them. Just this morning I was looking for something and came across the ultrasound photos, taken 3 years ago today, that showed my Hayden wiggly and cute. It was the last time I'd see her alive. Our second daughter, weeks later, joined her sister Ava in heaven and broke my heart forever. I do not want a pill and will never allow my self to be characterized as mentally ill. I am a bereaved parent. Its that simple. Thank you. ~A

Joey C Johnson said...

Jo, Thank You! Thank You! Thank You! We(all bereaved parents) are so LUCKY to have you as our Voice, our Supporter, our Listener, our Advocate, our Leader, Doer, World Changer! You are Amazing and I'm proud to know you and appreciate Everything that you have done for me, for Jack and for all of us as Bereaved Parents. <3 Chey

Hellen said...

You've said it so well.

I too am a trained therapist and my emotional reaction is similar to that of the first responder.

I'm deeply saddened and angry at how much of human emotion is being labelled as mental illness...and then is drugged.

Dr. Joanne Cacciatore said...

Thank you so much for reading and for your support. This message really must be heard far and wide. We do really have a duty to ourselves and each other to speak the truth.

Mary said...

I am an LCSW in private practice for close to 40 years. I am also grieving the recent loss of the love of my life, my husband also a PhD Clinical Psychologist. I have never known such grief. I have read dozens of articles regarding this DSM V issue and hundreds on grief and this piece stands alone. It is oozing with truth and compassion. I wish every person on this planet could read it...and get it. Thank you.

Mary Jane Hurley Brant said...

Those of us who have lost children are not the same people. We are stronger people but sadder people without our precious offspring. When we come together even here or there we teach one another how to make it. Peace to all moms and dads and grandparents and sibs suffering.

Mary Jane Hurley Brant, M.S., CGP

Dr. Joanne Cacciatore said...

Mary- thank you for your clinical- and human- wisdom. I am so very sorry about the loss of your Beloved husband. Even 40 years in practice cannot prepare us for such life-altering suffering. Holding you in my heart.

Sarah St. Onge said...


My daughter died two hours after she was born. They were offering me medication IN THE HOSPITAL!

I lost my daughter a little over a year ago, and while I have no opinion on others use of medications, I have chosen to go it naturally. I think that there are really bad days, but overall the natural progression of my feelings has been extremely healthy and healing.

This is a great post!

Thank you.

Ebe said...

Three weeks after my son's death and birth, I sat in my doctor's office for my 'check-up' sobbing and unable to speak. I told her I couldn't sleep or really eat or do anything. That's the depression, she responded.
I was dumbfounded. I am so sorry to hear that this is a rampant mentality in doctors' offices.
Thank you for writing this piece.


Dr. Joanne Cacciatore said...

Ongoing thanks to everyone- both public and private- for your enthusiastic support! It means a great deal to me and to the courageous parents who live each day in profound grief without a beloved child (children).

Lisa said...

Just today at an event, I told a piece of my story of grief and loss of children and a person, said.."well, what do you do to cope?" and I said, "how long do you have?" I do so many things to get myself to where I am in this moment and if it were not for pivotal, ongoing therapy, books, poetry, exercise, spiritual guidance, caring friends, therapy again...of the sort that there is no timeline and no quick fixes...that my insight is that I've just figured out there will be no switch that gets flicked back on, rather a daily practice of self-compassion and trying to find love and beauty in the world...minimizing my grief to only depression and so quickly sells it short. Thank you for your passion and eloquence in writing this piece.

Dr. Joanne Cacciatore said...

Thank you for reading, Lisa. Self compassion is, oh so, important.

My self-care page is here:

I hope its helpful.

Kelly said...


Your words are so powerful! As a mother facing the 5th anniversary of my dear Addison's stillbirth (3/10/07), I still am amazed everyday at how mothers and family of stillborn children are treated. I remember when I was admitted to the hospital and my husband was a nervous wreck. He did accept some medication to just functionf in the days surrounding her birth, but not once did I consider him to be depressed...he was dealing with an overwhelming grief of losing our dear angel.

One who has never experienced a tragic loss or the feelings of grief from such a tragic event will never understand the fine line between major grief and depression. Does it hapoen? Sure it does, but at two weeks out, we were just trying to wrap our heads arounds the tradgedy we had just been dealt. Each year that goes by is unique, some years harder, some easier.

I still think about my angel often. I am happy to report that I had twin girls that joined my oldest child 3 years ago, but it was the most anxiuos pregnancy because I worried about them every day. They don't yet know all about their older sister, but my oldest daughter does understand and still feels the grief of that loss. No one should be judged or assumed to be suffering from depression when truly it is grief. Our healthcare providers and insurance companies need to recognize this for what it really is...grief, plain and simple. Providing services for grief should be as clear cut as depression, unfortunately, we have a long fight to make that clear and understood from the point of a bereaved parent.

Thank you for your insight...may the world begin to understand more about the feelings of a bereaved parent, and not to just assume they know. Here's to fighting the good fight in honor of all of our angels.

Kara Chipoletti Jones of GriefAndCreativity dot com said...

Both of my sons died at birth. If it is deemed reasonable for me to be diagnosed with mental illness because I continue to grieve them more than two weeks, then I posit that all parents of living children should be diagnosed with mental illness if they continue to love them more than two weeks after live birth.

Fair's fair.

You want to judge and label my version of parenthood, then all parenthood is subject to the same standards. The DSM V and the people behind cannot have it both ways.

I will continue to call for bereaved parents the world over to step up, use their voices, express their continued love for their children and fight this pharmaceutical driven nonsense with all they've got!

Good for you, Dr. Jo, for going on the record for all of us!

In honor of Cheyenne, Dakota, Zuzu, and all the children who have died -- and whose parents remember them for the rest of our lives!

To the last breath,
Kara LC Jones

Joey C Johnson said...

Ever since I read your post(I've already commented once before), the anger and frustration has been boiling and I'm ready to explode! I am OUTRAGED at the audacity of those in charge of changing this DSM V, the ability for a DOCTOR to diagnose me as "depressed" TWO WEEKS after my child has died? It's not depression, it's GRIEF! In fact two weeks out I was still in shock, not truly believing this horrific nightmare really happened! But it must have happened because the funeral home called to let us know we can pick up our son's ashes. It's been five and a half years since my son Jack died due to being born premature and guess what people, I'm STILL grieving my son! He was and still is a part of me. We lost his entire future, the one we dreamed and fully pictured when we found out I was pregnant! Diagnosing me with depression and feeding me pills is not going help me grieve my son's death! Actually medication only places a hold on/freezes your grief, once you stop taking that medication(be it illegal, alcohol or antidepressants) it's like being back on Day 1 again, the day your child died ALL OVER AGAIN! In my opinion, medicating grief only causes more damage and more lost time. I'm not in the mental health field, I'm just a mom to son who died and I MISS him everyday and always will. I've signed the petition and only wish I could do more so hopefully this change can be stopped!
Thanks again Dr. Jo for all that you do, You're changing the world!
<3 Jack Kendrick Johnson 8/31/06 - 9/01/06

Kelli R. Rivera (Jen's Mom) said...

Depressed? July 27, 2002 my world changed FOREVER! It started just like any day, getting "ready" to take on the day and it ended being literally carried out of a hospital after my daughter, my first born, at 9 years 9 months and 4 days old (I could probably figure it down the the exact minute of her age)was pronounced "dead"! Am I to believe if I had gone to see this "Dr" on August 10th I would have been given a label? Not only was I in complete unfamiliar territory already, I would have gone to a professional, one who I trusted to be an "expert" and I would have been told that I had something wrong with me? Darn right there was something wrong with me... in a matter of minutes on one Saturday afternoon in the summer, just four days after my own birthday (which ten years later I still reluctantly celebrate) my beautiful daughter DIED? MY identity as "Jennifer's Mom" had been altered on so many indescribable levels. TWO WEEKS later the realness of it all still hadn't sunk in. The shock was still protecting my body, there is comfort in shock. However, this would fall under "depression"? I might have even been given a script to fix me? Do you know the damage that could have been done to me in that very moment? The effects your calloused diagnosis would have had on me in the long term? You want to put a "quick fix" on a life time journey. How will you live with yourself when the healing that can be done through actually experiencing the pain and grief to the fullest gets pushed under the rug, blanketed with pill bottles and I become a time bomb with bottled up pushed aside pain and trust in your heart it will wait and then one day very unsuspecting the pain and love pours out onto the floor. You many not think so, but I KNOW my daughters life, the life I created was and is worthy of the grief, the tears, the pain and the love!!! If you have a problem with that type of expression, might I suggest a new line of work? This not coming from one that has the same degree as you, this coming from a true expert...a bereaved mother! (Joanne, I am so so unbelievable happy, so truly honored, .. there really are not words for the gratitude I have that our worlds came together and that I could sit, and grieve, and MISS my daughter with all of the others. I am grateful for the rivers of tears, even the laughter and the feeling of not being alone and definitely the feeling of not being medicated)
In their memory!!!!
Because they still matter... and they always will!!!

David Pierce said...

Thank you, Dr. Cacciatore, for helping us be aware of the dangerous new language proposed for the DSM V. I believe it to be self-evident to many bereaved parents, at least in their hears, that it is a violation of natural rights for any institution, no matter how well respected, to make what appears to be an arbitrary declaration on duration of grief - and by implying that two weeks should be sufficient, the authors of the DSM are doing such a thing. Ideally, there should be no limits whatsoever, but it is the nature of a capitalist society to extract whatever minum it may out of workers, even those who have just lost children. I will do whatever I am able to help spread word that cruel language be removed, and replaced with a time-period less hostile to the bereaved.

Doug Bremner said...

Thank you for speaking out against the medicalization of a normal process, grief. My sympathies for the bereaved parents out there, and don't forget about the equally shattering loss for young children of parents.

Dr. Joanne Cacciatore said...

Thank you to all the new commenters. Thank you for sharing your pain and your stories. Your voices will be heard. Dr. Bremner, thank you for visiting and for your comment. Indeed, the premature death of a parent can have devastating effects on children. This, too, is absolutely essential for providers - and society - to remember.

Maria said...

My only child killed himself violently 15 days after being prescribed the SSRI Prozac. My grief will be a feature of my life until the day I die. It is a normal, natural response to the loss of a cherished child. I am not mentally disordered or psychiatrically ill. I am a mother whose child is dead and who experiences the grief that losing a loved one naturally invokes. Being a client of the APA and Pharmaceutical companies killed my son, I do not intend to let it kill me too. The DSM-5 committee can get its ill-informed and greedy hands off my grief

Karla Helbert said...

Dear Joanne,
Like so many others here, I can't thank you enough for all your work on behalf of bereaved parents. I am also a licensed therapist as well as a bereaved parent. None of my training could ever have prepared me for the depths of pain, anguish, emptiness and heartache following the death of my son Theo. Nor did it prepare me for the lifelong experience that my grief is and will be until my last breath.
At 3 months my precious son was diagnosed with a choroid plexus carcinoma. He endured 7 surgeries. I will never know what kind of pain my child experienced in his brief time here on Earth. His first chemo treatment resulted in "neurological devastation." Not wanting to put our child through any further pain, we brought him home where he received loving care 24 hours a day for 5 months until his death in our arms on February 20, 2006. I remember reading in the current DSM shortly thereafter, that “a diagnosis of Major Depressive Disorder is generally not given unless the symptoms are still present 2 months after the loss.” I was furious. Some panel that has no idea what I and my family had been through--the nights of holding my son, pre-planning every second of his funeral while he lay sleeping beside me, holding him as he took his last labored breaths, burying him, living each day knowing I will never see, smell, hear, hold him ever again--has the audacity to declare 2 months to be the cut off point of “normal” bereavement? And now, NOW they want to give it a mere 2 weeks? And recommend medicating the "symptoms"? What happens in the DSM 6? 2 days? Just go on write the prescriptions, and code it on Axis I at the funeral? Truly it is disturbing and disgusting. I signed the petition, I shared your blog. I sent it as a personal message to other mental health professionals. I hope more than 100K read your blog. Everyone should read it.
Thank you for your voice, your heart, your dedication and your fearlessness. You continue to inspire me. The MISS Foundation helped me hold on to my sanity. I was on the forums daily, sometimes multiple times daily for 3 years. What we need as bereaved parents is support, love, caring, witnessing of our experience. Acknowledgment that we each will have our own ways of moving through the terrible pain of the deaths of our children and plain flat truth that no matter how long, we will feel that pain. I can close my eyes, call up any number of memories, and be right there. And my son--all of our children--are as you say, worthy of every single tear. Grief is NOT pathological. Grief is a normal experience when someone we love so much, someone with whose very existence, is tied to your own, is gone from your physical being. To deny the beareaved that is to diminish each and every bereaved person's experience and dishonors their beloved's life and death.
You are so right--every word you write here is truth. I love the Walt Whitman quote--"Re-examine all you have been told...Dismiss that which insults your soul."

In their memories,

Ashley said...

Joanne, thank you so very much for being a HUGE voice for all of us bereaved parents, and for all of the bereaved families around the world. Your words have touched so many lives and you continue to fight for what's right.

As Mckenna's momma I am finding it hard to wrap my brain around being told you are clinically depressed just 2 weeks after a tragic loss. On Sept 27th, 2008 my whole entire world came crashing down on me. I held my daughter as her heart stopped beating, I watched the color drain from her face, I held her cold lifeless body in my arms, taking in every inch of her knowing that would be the very last time I would ever touch her, kiss her and hold her in my arms again. Do they think just after 2 weeks I am supposed to be "cured" from that kind of pain??? Who has the right to tell me that after 2 weeks I am supposed to "get over" and be diagnosed clinically depressed? It has been almost 3 1/2 years since my daughters death and each and everyday I miss her and yearn for her. Yes I get sad, yes I cry, yes I get angry, does that make me depressed because I miss my daughter? I think not.

Our society is already afraid to talk about death. Bring up child death and you could clear a room in no time. What kind of message will this send to society? People will be afraid to express their emotions in fear of being diagnosed as depressed. Some Dr's will just shove pills down people's throats because they think it is not ok, to NOT be OK 2 weeks after a traumatic loss. This is obsured and wrong on so many levels, and I just don't get it and never will.

Mckenna existed and she is MISSed so very much and loved deeply. I am not depressed, I am a grieving mother who's child DIED!!

Christine said...

Dr. Jo,

Thank you once again for being our voice.
My third child, Nora died at birth. I was in a coma for two weeks after delivering her. Shortly after waking up, we held her funeral. I barely had time to process what had happened to me. It would take me another month to fully realize the depth of my grief.
Ten years later, I am living each day to the fullest and part of that living is remembering my child who died. I continue to shed tears, for the love I have for her cannot be measured by time. I love Nora. My oldest children continue to remember, sometimes through tears. You cannot put a time frame on grief. I still shed tears for my grandparents whom I loved dearly.
This change to the DSM is absurd. I had family members, my own father refuse to talk to me because I cried for my daughter who had died. This change will only reinforce to them that they were right. This will hurt all the work that people like Dr. Jo have done for the face of grief. Please help us move forward, please help us let the world know that it is normal to remember and love the one who has died. Please.

sandie eide said...

I am a mother of three, two of my children, Zack and Katie are dead. It happened 2 years, 2 months and almost 2 weeks ago and I am sad. Very, very sad. Can you give me a pill to make me feel better, perhaps...or is this to make the people around me more comfortable? or is this to make the drug companies more comfortable? or is this to make insurance companies more comfortable? I believe depression is a real disease that should be treated and I believe sadness is a real feeling that should be felt. Katie and Zack deserve it.

Ginger R Breggin said...

Dear Joanne: Thank you so very much for your thoughtful, thought-provoking essay on the DSM V proposal to limit the ‘normal’ time frame of bereavement to two weeks, after which a person can be given a diagnosis of depression. Your essay, as well as the comments which have followed, express so very clearly the inhumanity of pathologizing one of the most fundamental experiences of being human: the act of mourning after the loss of someone who is beloved. To be falsely labeled as somehow being ‘abnormal’ or ‘mentally ill’ for the deeply human act of mourning is a cruel and denigrating and dehumanizing gesture. The DSM V proposal concerning bereavement casts aside thousands of years of intelligent and compassionate examination and accumulated wisdom concerning both love and loss. My husband, psychiatrist Peter R. Breggin, M.D. and I both fully support your efforts. Ginger R Breggin, Executive Director, Center for the Study of Empathic Therapy, Ithaca, NY

Anonymous said...

This is a ridiculous and insulting concept. Grief and mourning is a normal part of human life and we should not pathologize it. I cannot imagine being labeled as ill for feeling sadness after the loss of a parent or child or friend. It's bound to make patients angry... and it makes a complete mockery of psychiatry. To apply medical models of illness to normal life experience is wrong. Period. I have heard the proponents of this argue we are providing a label so people who are suffering are able to get help. While that is a very well-intentioned thing to say, it is my impression that we are doing this solely so we can bill for therapy sessions or BigPharma can get FDA approval for an SSRI to "treat" bereavement. I have a huge problem with this. One, it's not an abnormality to being with. Two, if we as psychiatrists want HMOs or MCOs to pay for such services, we should change how we do business not change how we define illness. It's much like pregnancy. Pregnancy is not an illness. It is a condition which benefits from oversight and management. Now, there are times when pregnancies become complicated and in those cases, yes, "treat" the medical abnormality. The idea that grief becomes depression after only 14 days is ludicrous. I struggle with the 2 month rule in our current DSM (and often refuse to apply MDD labels to those who are several months out from their loss despite what DSM says). We have to do right by our patients. I wish someone would show me how this will be honestly helpful to anyone. *sigh* Thank you for a very articulate piece. You make excellent points and I hope others read this as well. @SatiricalShrink

rhondacaseyjamesmom said...

Dr. Jo,

Thank you so much for saying what so many of us wish we could. The DSM-5 people couldn't be MORE off base.

In memory of those gone but not forgotten,

Casey ~ 03-02-01 to 03-09-01

Anonymous said...

I am not a professional, just a person who has experienced multiple losses in a short time. The soul shaking and all-consuming grief that followed has scarred me forever. It hasn't even been one year yet, and I am still not "over" it. Two weeks? I was barely able to dress myself two weeks afterwards let alone be past the grief and on to depression. I loathe this American practice of always pretending that life is awesome, that happiness is mandatory and death and loss is something to skirted, never to be looked back upon again.

Thank you for your educated and empathetic powerful words.

Melissa Flint said...

I, once again, find myself awed at the beauty, humanness and unadulterated compassion from which you write. My training has afforded me the opportunity to both understand and, at some level, ironically “need” the diagnostic criteria. As I practice (if I want to get paid in our current broken system), and particularly as I teach, striving to make some sense of meaning out of a vast array of symptoms and problems that I and my students will be asked to treat. Yet, my soul has always pulled away from the way we marginalize our fellow humans by the words we use, the diagnostic criteria that we employ, the label we give those in pain, in what has become our current (dare I say schizophrenic?) mental health care system.
I cannot agree with you more, Dr. Cacciatore! “If we wish, as a society, to truly help those suffering in the aftermath of loss, then we must make the move toward collective compassionate and open hearts.” In order to do this, we – the clinician – must dare to enter that sacred place where the pain of our fellow human must be held with care, regard and respect. It must not be treated as an “affliction” or a “disease”. Sorrow, particularly that felt after traumatic loss, is especially vulnerable to being over pathologized. And, in doing so, we have taken yet another piece of being away from those who are bereaved – as if their particular loss was not enough. We now call them “disordered”. When I sit beside a woman who has buried her child, or beside a man who has buried his soul mate of over 50 years, how dare I… HOW DARE I…. call the enormity of their suffering a disorder???
So, with you, I WILL NOT. As big as the love is, so the sorrow will also be.
My highest regards for work well, well done.
Melissa Flint, Psy.D.
Assistant Professor
College of Health Sciences
Department of Psychology
Midwestern University, Glendale

Anonymous said...

Time used - not as a guideline but as evidence - to determine when a person is mentally ill is the opposite of reason and shows no understanding of the human mind, heart and soul.

Willa Goodfellow said...

I am a minority voice here. I am a person who suffers from Depression. People who have Depression have family members who die, too. Bereavement and Depression are not mutually exclusive. Those of us who have both need to be heard, too.

When my mother died this year, I paid attention. I could tell the difference. I knew when it was normal grief. It didn't change into depression. Rather, as the grief was letting up, I relapsed into a full-blown depressive episode, after about four weeks. I needed treatment for my Depression, not for my grief. I didn't need meds. But I needed treatment.

Most people who are bereaved do NOT have Depression, and there are ways to tell the difference. I wrote about the difference at

Most people who have Depression also do not need medication. The DSM does NOT tell doctors to medicate grief. It does NOT even tell doctors to medicate Depression. That's the sales reps talking, not the DSM.

Many are angry at the over-medication of Depression. I am, too. Read the rest of my blog. Many are angry at doctors who don't take time to listen. I am, too.

But please, listen to me. People who have Depression need help, even when they ALSO have very natural grief. Direct all this energy to the real issues. Train doctors to recognize, listen to and sit with natural grief. Extend the two-week time frame for diagnosing ANY depression. Train doctors to recommend better treatments for mild and moderate depression. But please, please don't throw those of us who suffer from Depression under the bus with the Bereavement Exclusion.

Grandma Melanie said...

Joanne, David Elkins directed me to your website and I feel so moved after reading your blog post. You speak directly to the heart with powerful words that so many of us wish the DSM-5 committee would hear with their hearts. I am so inspired by your work. I copied several of your wonderful quotes on grief and thought I'd like to share one of my favorites that I often share with grieving clients. It is an excerpt from Anne Lamott's book, Traveling Mercies. "I was terribly erratic: feeling so holy and serene some moments that I was sure I was going to end up dating the Dalai Lama. Then the grief and craziness would hit again, and I would be in Broken Mind, back in the howl.

The depth of the feeling continued to surprise and threaten me, but each time it hit again and I bore it, like a nicotine craving, I would discover that it hadn't washed me away. After awhile it was like an inside shower, washing off some of the rust and calcification in my pipes. It was like giving a dry garden a good watering. Don't get me wrong: grief sucks; it really does. Unfortunately, though, avoiding it robs us of life, of the now, of a sense of living spirit. Mostly I have tried to avoid it by staying very busy, working too hard, trying to achieve as much as possible. You can often avoid the pain by trying to fix other people; shopping helps in a pinch, as does romantic obsession. Martyrdom can't be beat. While too much exercise works for many people, it doesn't for me, but I have found that a stack of magazines can be numbing and even mood altering. But the bad news is that whatever you use to keep the pain at bay robs you of the flecks and nuggets of gold that feeling grief will give you. A fixation can keep you nicely defined and give you the illusion that your life has not fallen apart. But since your life may indeed have fallen apart, the illusion won't hold up forever, and if you are lucky and brave, you will be willing to bear disillusion. You begin to cry and writhe and yell and then to keep on crying; and then, finally, grief ends up giving you the two best things: softness and illumination."
Melanie Coughlin, LMFT

Zoey Mendoza said...

On 10/18/10, my husband took the lives of my two children, Jada Soleil (age 5) and Jordan Vaughn (age 3) before taking his own life. Needless to say, my life was destroyed on that day, and I have done everything I know how to do in order to survive. Within two weeks of my loss I was connected with a beautiful therapist who specializes in working with people who have experienced Traumatic Grief. I have been lucky enough to meet with my therapist for several hours, every week for the last 16 months in order to process the very grievous and complex loss of my family. About a month ago my insurance company, United Healthcare, notified my therapist that they needed her to justify why I required continued therapy. They insisted that she provide a DSM diagnosis for me, and list, in detail, the ways in which I am NOT able to function in my daily activities in order to "prove" that I still "benefit" from weekly therapy. Yesterday my therapist told me that a rep from United Healthcare called her to tell her that they were granting me a one month extension in therapy services, but that if I didn't make significant improvement in that span of time, that my therapist would need to do a "peer review" and present my case in front of a boardroom of United Healthcare representatives in order to justify why I still need therapy. As if THAT isn't ridiculous enough, they are THEN requesting that I will have to go in front of the same board of people to basically convince them that I still need therapy. I lost my sweet, beautiful babies at the hands of my husband LESS THAN A YEAR AND A HALF AGO, and United Healthcare doesn't want to pay for me to see my therapist once a week to continue to work through my grief. It's all about money. And, by the way, I pay $630 a month for my health insurance. The cost is RIDICULOUS. said...

When I heard about this proposal I first thought of the writinsg of Olaf Stapledon, a science fiction writer. He wrote of a society in which people are hooked about to a drug to keep them happy. Is that where we are headed--a society with no pain or discomfort?

I will be the first to say I do not like personal pain or discomfort but medicating for grief is a terrible idea. Would many of our great songs or works of art exist if the artist had taken a pill? Would we have the song "No tears in heaven" if Eric Clapton had just taken a pill when his son died? What about Adele? A break up? Take a pill and don't think about singing any songs informed by grief.

passfailparent said...

As someone who has both personally and professionally been affected by grief I cannot begin to imagine how "experts" would determine that two weeks can adequately delineate the difference between grieving and depression. What does it say about our humanity if we cannot sit with the pain of others and ourselves for greater than 14 days without pathologizing a normal, and deeply human, experience?

Two weeks after my father's death I could barely see through the fog of my sorrow, but my colleagues, friends and neighbors were kind enough to normalize that for me and offer their gentle support. Had any one of them suggested I seek professional help two weeks after his death I would surely have retreated further into my sadness, rather than made my way at my own pace to a place where I could function more freely and deeply as myself.

This inhuman, draconian change to the DSM-V, as well as the overarching themes of pathologizing other aspects of the human condition, makes me ashamed to be a mental health professional, if these are the supposed best practices that our profession offers.

Thank you, Joanne, for your profoundly moving and inspiring piece, and to all of you who have lost loved ones, for your remarkable courage and spirit.
-Jennifer Meade, LCSW

sandie eide said...

I am so sorry this happened to your beautiful family, and an insurance company can insult you in acting like your sadness is curable. I hope the best for you.

Michelle Mclaughlin said...

I am choosing to write this to advocate for everyone out there who needs a voice. I am Michelle and on August 7th of 2006, I lost my little sister, she was 13 years old. It has been not quite 6 years and it still can feel as fresh as the day it happened. Sarah was a loving little girl with a beautiful spirit, born with cerebral palsy, she became the special little girl of our family. Everyone who met her, loved her, it was impossible not to. Sarah died on a sunday at 1:11pm in our home, she died of complications relating to pneumonia. I still see mother suffer, a pain like that does not go away, it only integrates into who we are. I am writing this with tears in my eyes because I know the revision to the DSM is wrong in my heart. To ask anyone to move on from the loss of a loved one with a time limit of 14 days is asking the impossible. If 6 years have past for my mother and I and we have not "healed" then maybe a time limit is asking more than anyone can give. It is not pathological to feel, it is apathetic to ask someone otherwise.

Unknown said...

Sadly, when I entered a neurological rehabilitation program several months after the car crash that killed my son, Blake, (see Joanne's blog), I was allowed to enter the program on one condition: I take antidepressants. Actually, as soon as still being in the hospital, after I was awaking from the coma, I was put on antidepressants under the guise they are often used for "pain management." When I asked one particular nurse why I was being given anti-depressants I was told, "So you don't cry so much."

No one in the hospital, outpatient therapy, or neuro-rehab wanted to "deal with" the grief - which, by the way, has similar symptoms to a brain injury - and it was made horribly clear to me over and over.

Grief is a Human Condition, not a disease. It would have been helpful during the 4 weeks of inpatient therapy, the 6 weeks of outpatient therapy, and the three months of neurological rehab if someone, anyone, at any point had not been painfully and silently obvious about the most obvious "symptom" of the car crash: my only child was dead.

Anonymous said...

I lost my Mother to ovarian cancer when I was six years old and I have dealt with this loss ever since. Every birthday, mothers day or any other holiday for that matter, I feel a sense of loss and abandonment. On my wedding day I yearned for her and recently as I am facing a decision that may alter the course of my career I ached to talk to her, to ask her advice and to have her tell me that she believes in me and knows that whatever I choose will be rewarding because I am hardworking, intelligent and strong. Although I have yearned for my mother so many times I can't count them I decided to seek help from a counselor this time and made an appointment last month. I enjoyed the first session very much. Towards the end of the session I began to wonder why I had waited so long to engage in therapy. I had filled out all the insurance forms before the session began and at the end of the session my new therapist said she was going to list my disorder as depression which bothered me a bit but I let it go. After learning that I will now have a mental illness on my medical record for the rest of my life I am even more upset about the situation. I reached out for a connection with another human being and I got labeled with a mental illness. There is something very wrong with that. The system is broken. I don't blame the therapist in this situation I blame a system that puts an industry who by definition is required to focus on a profit margin in charge of making decisions about the mental and physical well being of people.

Halo said...

this year marks 9 years since the still birth of my beloved first son (10 days overdue). i would like to believe that at the time no one thought i was clinically depressed, but instead that i was simply (HA!) grieving the death of my child. but i don't really know, because i was wrapped up so tightly in my own cocoon that i didn't really notice anyone else for a long time. i don't know of anything on earth that would have helped at the time, but i definitely know that medications to numb my pain would not have been the answer. there are some things in life we just need to FEEL with every nerve ending (physical and emotional), no matter how much it hurts. that's the only way to get through it, come to terms with it, and learn to live with it.

could i have done with some counseling? probably. the biggest reason why i never sought any is because i felt they **could not** understand. that the medical view of my grief was that it was unhealthy and disproportionate and all-consuming. there is no one near me trained in what it means to grieve the death of a child, which means there is no professional near me who can even begin to understand it. and a friend "proved" that to me. she is a therapist and at one point suggested i "get help". but the mere suggestion that what i was feeling wasn't ok from my friend who had watched me go through the process, told me enough. i've had other encounters over the years with therapists (some of them "trained" in grief) that have left me so upset and hurt and feeling so misunderstood that i won't ever go.

as it is, i am doing just fine. i have found my own coping and healing mechanisms.

looking back, i can't believe anyone could look at me two weeks (or even two months) after my son's death and call me clinically depressed. i was grieving deeply for a child that i love to the depths of my soul even now. i will grieve for him until my last breath. my soul will carry the scars of his death beyond this life into whatever comes next. and none of this is depression.

Yasaman Nafisi said...

Dr. Cacciatore,

Thank you for speaking out on behalf of every single human being on earth for all of us will at some point experience grief, if we already haven't.

I find it hard to believe that we are going backwards in our evolution of human understanding. Now that the world is visible to us through amazing technology and at our fingertips, we can see the oneness in human suffering, pain, grief, and joy and love and happiness too. One would think that understanding of this magnitude brings more compassion and better means for helping one another. Instead, the pain of loss has be trivialized and defined and quantified to the point to which we have become even more harsh critics of each other's suffering and somehow feel the right to judge another's loss and the worth of that loss.

I am truly speechless as I feel like we are not advancing in the art of counseling and therapy, but instead reversing into a difficult and dark place where the very essence of our humanity is being taken away.

Bravo for speaking up!!!!!

~Yasaman Parsi

SB said...

Don't grow weary in well will reap a harvest in due time if you don't lose heart.

Caryl Blank said...

Dear Dear Joanne,
This article is as beautiful as it is important...a recurring theme in everything that you write. I never fully understood how important until it affected me directly. As you know, I lost my mom, my best best friend for my whole life this past July 20 to lung cancer. There are just no words for the feelings that I experienced at that time-you were "there"- I didn't think I would survive. For weeks I just cried and cried and cried. There was barely a thing that didn't set me off. Normally I would have helped ease the pain with wine or tequila but in the past year I have also had issues with diverticulitis that prevented me from doing that so I just had to 'feel'. And it was horrible and hurtful and several people kept saying "deal with it" or "get over it already" and this was after say 2 or 3 months. It is still only a few weeks shy of 8 months and I still have moments of terrible sadness just not as frequently. I think that's because I DID just go through the horrible 'process' of grieving. I thought about going to a grief counselor after 3 months but seriously,I was working and muddling through my life so who was going to be able to help me by telling me what I already knew..that this was going to hurt until it stopped hurting so much. So I kept telling myself..."if I still feel AS bad next month"..... And finally, while I think about and miss my sweet and wonderful mom every day, I realized somewhere around the New Year that if her death taught me anything at all it should be that life can turn on a dime and that I should try, as hard as it is, to pull myself up by my bootstraps and try to be a participant in my own life. I know my mom loved me so much and would cry if she knew how miserable I am when I come home from driving in the rain and there is no message on my voice mail just to make sure I got home okay. That is still very hard on me.

I am not a Mommy's girl but just a divorced woman who never found anyone else-yet-and became even that much more close with her mom. We talked every day of our lives until she became too ill and I am so lucky to have had that kind of relationship with my mother for over 50 years. She deserved the kind of grief I felt when she left and there was nothing abnormal about it. Anything less would have been insulting to her I think. I really do believe in therapy and that it can help but I have always been the kind of person that helps myself when I am ready...and it seems to be happening again.

Thank you Joanne for being there for me when I could not breathe. And thank you for this beautiful article. People that can not understand grief and think it 'crazy' have not experienced it. But they surely everyone does...sooner or later.

Much Love,

MomSurvivor said...

The guidelines outlined by DSM V shouts blatant transparency in the fact that the true motivation is to produce revenue for the pharmaceutical companies. Not only am I a bereaved Mother, but I have lost beloved family members to cancer, a tragic automobile accident and a massive coronary.
23 Years ago my Grandmother, Sally died of lung cancer at 63 years old. Sally was the type of woman that always had a smile on her face, never had a harsh word and liked everyone she met. Her death was painful and excruciating for her. She died holding my hand. Not a day goes by that I wish she wasn’t with me.
9 Years ago my Cousin Jesse died at 19 in a horrific car accident. Jesse was the sunshine of our family and had a heart that overflowed with compassion for others. My Aunt and Uncle struggled greatly with his loss and the only resources available to deal with their grief was seeing the family doctor who prescribed antidepressants and anti-anxiety medication. When we lost Jesse I honestly thought that was the worst thing that could ever happen to our family.
20 Months ago I lost my youngest son (Zachary) at birth due to extreme negligence and cruelty. Zach’s death could have easily been prevented. I live with the anger of this and the injustice of a broken OB system every day. I still sleep with the blanket Zach was wrapped in. During my stay in the hospital after Zach’s birth I was given Prozac as soon as the feeding tube was taken out. The Dr. never asked if I wanted this drug. In the months after Zach’s death the doses of antidepressants were increased and mixed with the new drugs, but the pain never got better. Ultimately, I had the state of mind to understand that the drugs were making me feel worse and I ended the toxic cycle. My son was dead. There is no drug to make that better.
11 Months ago my Uncle Jay died of a massive coronary at 51 years old. Remember my cousin Jesse? Uncle Jay was his Dad. I know without a doubt that Uncle Jay died of a broken heart facilitated by prescription drugs prescribed by his family Dr. Without nurturing & compassionate care, the loss of Jesse was just too much to bear. The day Uncle Jay died he had been cleaning the house, mowing the lawn, preparing for a 10 day Florida vacation with my Aunt and just sat down in a chair and went to sleep. Uncle Jay was so full of life and I can still hear his unique, comical voice giving me guidance.
According to the DSM V guidelines I should be truly insane and mentally ill. Do I hurt? Yes. Do I live a functional life? Absolutely and do so without assistance from Mr. Pharmaceutical. Organizations like the MISS Foundation perpetuate a strong foundation of healing that encompass compassion, understanding and an acute awareness of grief. Drugs mask the hurt. Drugs kill. Ask Uncle Jay.
TO THE AUTHORS OF DSM V, have you lost a child? Do you even know what it feels like to lose someone that you love dearly? At this point a logical person can only assume that there have been substantial financial benefits offered to you to push the guidelines of DSM V. Ask yourself; is your soul and moral turpitude worth what is being offered for you to sacrifice the mental health and wellbeing of countless grieving individuals? Labeling grieving individuals with MDD within any set timeframe shows gross ignorance and will cause irreparable harm to thousands of people trying to live and function with what is the reality of life without their loved one. Shame on you for adding more complexity to their pain. Now is your time to do some deep soul searching and decide whether or not you will take the path of integrity. Countless lives depend on you doing the right thing.
A Living, Breathing, Drug Free and Grieving Individual

Anonymous said...

Joanne, your blog is beautifully and eloquently written. There are no words. As someone who watched my stepmother's pain at mourning the loss of both of her biological children before either hit the age of 24, I can say that if she acted "crazy" during that time, she had the right to do so. There is no timeline for grief. She has survived and has thrived, but she has never been the same and why in the world should anyone expect life to " go back to normal"? Life changing....

Anonymous said...

What resonates with me most is the "denial of the authentic human experience of sorrow." It was hard enough to get friends and family to stand in my presence as I worked through my grief. Many did not. Have any of the decision-makers for the DSM V lost a child? Probably not. It's hard for people who have not experienced such a tragedy to understand. I needed compassion, time and patience.

Discove and Recover said...

Thank you for taking time to write this much-needed post.

Duane Sherry, M.S.

Anonymous said...

We could all take a lesson from Dr. C! What a wonderful, caring and thoughtful person. I absolutely think that her position on this is spot on and was happy to sign the petition. Keep up the much needed work Dr. C. YOU ARE the light that so many grieving people need to touch. What a great Blog!!!!

Christine Shall said...

I agree whole-heartedly with Dr. Cacciatore blog post DSM V and Ethical Relativism. As an expert in this field, Dr, Cacciatore has both the knowledge and the wisdom to address this issue. Any time limit placed on on grief or bereavement can only be described as ignorant and despicable.To initiate a diagnosis of mentally illness to someone experiencing grief is unacceptable.

Anonymous said...

I am adamantly opposed the proposed change in the DSM 5 diagnosis guidelines. This change would add insult to injury. I agree wholeheartedly with the statement made by Allen Frances - "Grief deserves dignity not diagnosis." Please continue doing whatever you can to try to make sure this change does not go through. Thank you so much for what you are doing.

Kelli Montgomery said...

Dear Joanne,
Can we nominate you for the DSM V Committee? Thankfully, (and sadly), you get it.
I am shocked that other leaders in the psychiatric field are proposing that bereaved parents who mourn their child for more than two weeks be labeled as mentally ill and drugged as a first line of treatment. Huh?
I am a parent who lost my first child five years ago. The loss is still unbearable. It affects me every day, greatly. I do not however have a mental illness. I wasn’t mentally ill before my child’s death, and I am not mentally ill because of it. I am just a regular person who needed someone to talk to following the most significant loss of my life. Is that so hard to understand?
What are you thinking DSM V Committee??

Sari Edber said...

By offering bereaved parents a diagnosis and pill to "cure" their "depression", you are ultimately saying that their child isn't worth their sadness, their tears, or their grief. Bereavement is a life long journey. Unless you have walked in our shoes, DO NOT TELL US HOW AND WHEN WE ARE ALLOWED TO MISS OUR CHILDREN. I will always long for our son, Jacob. ALWAYS.

Bug Family said...

Dear Joanne,

I am so outraged and saddened to hear how these families have been treated. And worse, by people they trusted would be able to truly aide them. My heart goes out to every single one -- every. single. one.
It also makes me so angry that the treatment of others was likely done out of fear and money and such a lack of empathy and understanding. And a will to even try. To even truly try and grasp what this pain is like.
We don't want to be fixed. There's nothing wrong with us. We just may need some help. Grief and Death should be a huge part of any medical training if it isn't already.

And yet, it's confusing and ironic to me that there are so many wonderful medical professionals and people, (Joanne, what would we do without you?) and to them, I extend my sincerest gratitude. You've helped in ways you can't even imagine.

For James, for ALL of the children who are worth every tear, every bit of love, and every ounce of fight we have in us to fight for what we believe in.
I've cried every single day for over a year and and half I don't anticipate that will ever go away. I don't want it to. I MISS my child. And it's as simple as that.

I love you James.

Anonymous said...

This inclusion of grief as disease is crazy. Without question, loss of a child during pregnancy can cause PPD or PP PTSD just as a live birth can cause these medical issues. But death and grief alone are depression or disease or medical. They are human.

Marjan said...

Commenting that three years ago my son died as a result of a malignant neoplasm. I had another three year old at time of his death. The doctor diagnosed me with depression. A year later, my husband got custody of our four year old because of my depression. Though I see do him him regularly the past few years have been a nightmare.

Anonymous said...

Thank you for saying what needed to be said. Sorrow and grief are integral pieces of the human experience, and they should not be medicalized. It is hubris and arrogant to think that anything so deeply human can be "solved" by a diagnosis and a pill.

Also, to the argument that a shorter bereavement window (2 weeks) would mean that the bereaved would get needed services and "treatment" under the label of "depression," I say that is ridiculous. If a doctor told you that in order to receive antibiotics for an infected wound, he would first need to break your arm, you would rightly call him a hack, wouldn't you? Treat the problem in front of you. If the system would rather pay for the treatment of made-up illnesses rather than something that would directly address the problem (grief counseling), there is something profoundly wrong with the system.

Anonymous said...

Dr. Joann,
Thank you for sharing your opinion about the new this topic in the DSM5. As a person that works in healthcare (emergency department) I have seen many injustices happen to patients not by the professionals that care for them, not by their families, and not even by their own accord. The injustice is the systematic structure of the handling of people now and in the future. These people are wives, mothers, husbands, fathers, daughters, sons, brothers, sisters, grand-parents, in-laws, outs-laws, friends, neighbors, dog groomer, mechanic and even and adversary. They are subject to the electronic data records that are currently being streamlined in all managed health care organizations, Medicare providers and the VA etc.

What is wrong you might ask?
Well the fact is “the only information that is in a person’s record is as good as the person doing the entry and the software that it operates with!” Recently a patient that arrived with general abdominal discomfort. (The patient admitted to taking a large amount of Tylenol for her aches and pains) During the initial assessment the patients E-record was checked by the medical staff. It was found that the patient had sought treatment for depression. The staff working with the patient currently at the facility noted this issue and gave report about it to next shift. As the night progressed the patient became agitated as she arrived for a different reason and felt that she was in SI protocol. As she escalated, the patient’s behaviors were further recorded electronically and eventually a decision was made to remove her belongings and all items from the room as the patient was determined to be DTS/DTO. Eventually the patients spouse was notified and was able to come to the facility after work.
Thank god they did….The patient received the charted depression diagnosis by an individual that was treating her for some household issues that were going on. The family had a military member that was experiencing their own mental health issues that were targeting the household. This is why the patient sought treatment previously.
“Chronic Depression” has too many implications to be diagnosed in two weeks or less. I believe that without advocacy any person could be stripped off their rights as fast as this patient was because of a combination of too many generalizations of depression and the incorrect messaging of electronic data that allows for charting do be done with check box efficiency.
If we are a society of professionals that are looking to become the best at our “Practice” then I say pull the plugs on the computers, stop the over-prescribing madness and just listen to what the patients are really saying.

So I have to question? Is our ideals of social norms and westernized perfection just really hurting us instead?


Anonymous said...

Dr. Joann,
Thank you for sharing your opinion about the new this topic in the DSM5. As a person that works in healthcare (emergency department) I have seen many injustices happen to patients not by the professionals that care for them, not by their families, and not even by their own accord. The injustice is the systematic structure of the handling of people now and in the future. These people are wives, mothers, husbands, fathers, daughters, sons, brothers, sisters, grand-parents, in-laws, outs-laws, friends, neighbors, dog groomer, mechanic and even and adversary. They are subject to the electronic data records that are currently being streamlined in all managed health care organizations, Medicare providers and the VA etc.

What is wrong you might ask?
Well the fact is “the only information that is in a person’s record is as good as the person doing the entry and the software that it operates with!” Recently a patient that arrived with general abdominal discomfort. (The patient admitted to taking a large amount of Tylenol for her aches and pains) During the initial assessment the patients E-record was checked by the medical staff. It was found that the patient had sought treatment for depression. The staff working with the patient currently at the facility noted this issue and gave report about it to next shift. As the night progressed the patient became agitated as she arrived for a different reason and felt that she was in SI protocol. As she escalated, the patient’s behaviors were further recorded electronically and eventually a decision was made to remove her belongings and all items from the room as the patient was determined to be DTS/DTO. Eventually the patients spouse was notified and was able to come to the facility after work.
Thank god they did….The patient received the charted depression diagnosis by an individual that was treating her for some household issues that were going on. The family had a military member that was experiencing their own mental health issues that were targeting the household. This is why the patient sought treatment previously.
“Chronic Depression” has too many implications to be diagnosed in two weeks or less. I believe that without advocacy any person could be stripped off their rights as fast as this patient was because of a combination of too many generalizations of depression and the incorrect messaging of electronic data that allows for charting do be done with check box efficiency.
If we are a society of professionals that are looking to become the best at our “Practice” then I say pull the plugs on the computers, stop the over-prescribing madness and just listen to what the patients are really saying.

So I have to question? Is our ideals of social norms and westernized perfection just really hurting us instead?

mamagotcha said...

Wanted to let you know about this story I saw from the Washington Post:

Thanks for all your work!

Heather said...

I agree that grief should never be labeled as a mental illness. But, why are all of the considerations listed in the postscript so serious? There is a terrible stigma associated with mental illness. Grief is a normal part of the human experience, as is mental illness. Some will have to deal with more than others, some will have a harder time overcoming. Nonetheless, a person should not be excluded because of experience with either.

joeringle said...

Thank you for this article. Having learned under the DSM-IV and then going into church-based work, it is so important to stay on top and understand the implications of such changes.
Further, and someone who unexpectedly lost his wife just 2 months ago at the age of 29, to think that I should be 'fine' by now is reprehensible at best. I have 2 young children. The first 2 weeks of my grief I didn't even experience grief because I was working on stabilizing my home for their sake. My real grief didn't even BEGIN until a few weeks ago. It takes time to fully realize that the person is gone, much less process that, much less move forward from the deep sadness associated with it all. And I don't need drugs to 'help me' through. Neither do I need the stigma just because I'm experience normal human loss and sadness.
So, thank you for writing this. It is my hope that this gets changed. If not, it is my hope that practitioners use their heads AND their hearts before submitting such a diagnosis.

Camille LaRue Olsen said...

Dear Dr. Joanne, thank you for this invaluable post and for all the work you have been doing. Your approach to grief is the only sane one. My family has dealt with our grief about my brother's death with numbing prescriptions and alcohol-- these have NOT been the answer. Your words about a parent's child being worth *every* tear are INVALUABLE and spot-on. Only time and the natural progression it gives, along with support from caring listeners, can heal the wounds to the extent they are healable, even if one is left with a big ugly scar with keloids... so be it. And two weeks passing before one can be labeled mentally ill -- RIDICULOUS!!!! Sorry for all the all-caps but I feel pretty strongly about all this. Thank you so much for your wisdom here!

Dr. Joanne Cacciatore said...

Thank you so much, everyone, for all your thoughtful comments and for your feedback on this sensitive topic. Truly, human suffering following the death of our Beloved evokes a deep wellspring of emotion and psychological pain. While I am unable to respond to each person individually here, please know I have read each one of your stories and comments mindfully, with my full heart and mind, and I am truly grateful that you have shared. I learn so much from every experience I have with those enduring that which is ineffable. Thank you.

revdavemapes said...

Great post.

Many wonderful comments by real people who seem to be more expert in understanding real grief and its accompanying symptoms & effects; by the fact that they've gone through it themselves, than do the bureaucratic developers of a mechanized system of diagnosis & treatment.

We are expressing a normal and built in release of emotional energy(ies) when we are grieving. These ought never be described as disorders. They are responses to the trauma that dis-order has caused to enter into a person's life experience.

No one can tell another just how much grief, how long grief or what kind of grief is fitting for a situation. We may only offer counsel and comfort that applies to the situation in the hopes that it may be of some help to the grieving person.

God created us with a grieving response to sad and overwhelming situations that we are to use when going through these experiences ourselves. We all know how Jesus responded to the trauma of the cross when He took the opening verse of Psalm 22 to His lips saying, 'My God, My God, why have You foresaken Me.' Even the God-man responded to great grief.

No system, mechanism or technology can substitute for that.

Thank you again for your great post.

Pastor David

Dana said...

Wow. Thank you for this very insightful article. I came here from another blog about grief, but the topic of this post struck a chord with (against) something I'd read today in The Week Magazine, "Four out of five people between the ages of 9 and 21 at least temporarily show some form of mental illness--includeing depression, anxiety, obsessive-compulsive disorder and addiction." My first thought was that to come to such a high number, they are counting an awful lot of normal teenage and young adult emotions and experiences as mental illness.

I, personally, battled for years to "stay off of" anti-depressants because counselors and doctors would not believe me that I was struggling from severe burnout and exhaustion and were convinced that anti-depressants were what I needed to "fix" what I was feeling. Since I wouldn't take them, I was non-compliant. Incidentally, I didn't get better as quickly as some others I knew (coming off similar traumatic, exhausting experiences as I had been through in the previous years) who did take anti-depressants. Also, incidentally, a few years later, 2 of those people collapsed in full body fatigue and nervous exhaustion with a crazy conglomeration of nervous system problems. I believe the anti-depressants that made them feel better masked the real issue of exhaustion and enabled them to, ultimately, get worse.... I did not need anti-depressants. I needed rest, and more rest, and more rest. With that, I am slowly getting better. It was so frustrating to not be supported in dealing with this in "normal" ways, but only be pressured and labeled (depressed, non-compliant, etc.) So my issue was burnout, not grief (though I was also dealing with some pretty heavy losses during this same period when I was trying to recover), but so much of your reasoning here resonated with me and my situation.

Anyway, I'm all about "destigmatizing the idea of mental disorder" as the co-author of the study I previously quoted says she hopes her results (showing 80% of 9-21 year olds to have at least a temporary mental illness. But I am NOT for destigmatizing mental illness by labeling the full range of human emotions that help us live in and through very crappy situations as mental illness. That does no one any good--not the people with mental illness and not the people declared to have an illness they don't. If someone is burned out or grieving or hurting or confused, they should be able to get help and support without having to be squeezed into a label that isn't accurate and doesn't fit, no matter how destigmatized that label is.

Anonymous said...

Amazing! I have no clinical experience at all but the post was incredibly moving and to a layman seems unbelievable that the medical society would be so quick to label someone who has been through such unspeakable grief. I can't imagine that if they were to sit back and put their selves in this position that they too would not need more than 2 weeks to even begin to heal.
Fortunately, I have not experienced the loss of a child the mere thought brings me to tears, however I have experienced the murder of my closest cousin and childhood best friend. It will be 10 years this 4th of July and I still grieve for him. Not constantly, but occasionally, and it still hurts as mush today as it did then.
The thought of being labeled because I lost someone I truely loved and cherished burns me. We are all different, each human unique and deserve the compassion and care you spoke of. Everyone deals with death and loss differently and I don't believe we as a society or the medical professionals have a right to tell someone how long they are allowed to feel that way.
Again beautifully written, I'm so glad I came across this today!

Anonymous said...

I just hope none of these "experts" ever, EVER, have to try to live within the guidelines they are seeking to implement.

Terri said...

Joanne, thank you for your eloquence in writing about such an important issue. As a licensed mental health clinician and the mother of three boys, including one stillborn, I am at once outraged and speechless at the proposed changes to the DSM involving grief and depression. As a society, we see grief as taboo and falsely believe that we by pretending that death doesn’t happen, we will somehow escape it. Despite our existential angst, the truth remains: death, sometimes traumatic, will happen. We will grieve, we will feel pain. We fight so hard to make others understand that our children are to be remembered, to be honored, not to be treated like an illness that can be medicated away. This proposed change is nothing but a step backwards in time and progress. I wonder what people would think if the new DSM proposed to revert back to older theoretical understandings of other issues and problems which are no longer considered such. In twenty years, what will we think when we look back on this change, the understanding of grief as pathological in nature? Will we be proud of the result? I doubt it. In my son’s memory, and in the memory of so many other much loved children, I thank you for giving them (and us) a voice.

Sam's Mom said...

As others have also pointed out, at two weeks after my first son died, I was still in rather a state of shock. A friend at work who'd lost her son years before wisely told/warned me that at about six months out, it would all just really hit me and become real. She was wrong. . . but by just a few weeks. At five months after he died, I hit bottom, so to speak. I couldn't really stop crying for a few weeks (everything and anything seemed to make me think of my son.) And then, somehow, thing seemed to get better somehow. This was without medication at all.

And then, there was the almost four months my son was in the hospital after he was born, fighting so hard to stay with us. A social worker of some kind came to see me because one afternoon when I thought I was alonge (relatively) I was crying out of worry and exhaustion in my son's hopsital room. Apparently, the nursing staff thought this was inappropiate activity. A social worked of some kind visited me. This social worker couldn't prescribe drugs for me, but basically, she kept pushing me to go to my regular doctor to get them. I refused because it was/is likely my son's congenital defects were in part caused by the fact that I'd been on an SSRI for anxiety when he was conceived. I weaned off so that he wouldn't have additonal pulmonary fuction issues at birth beyond what he already had.

Everyone that I reminded of this seemed to look at me as I were already crazy . . . but my husband is in medicine, and had done a "literature search". We had some knowledge . . . and we think that this also annoyed a lot of the people who worked with our son and us.

Our personal experiences have given my husband more compassion and understanding in working with his patients.

Loraine Ritchey said...

I contacted you by email and you suggested I link a couple of my posts to your blog - thank you . I have written hundreds of thousands of words about the loss of my son.although I have been unable to "take on" the medical journey that we were on.... that will come when I can purposely relive thoser months . But there are two posts that give one an insight to my poor brain on grief and what happened when I tried the pills as well a suicide. and at the beginning of this month- there are links in green to other posts about our journey that continues - I hope that by being totally honest with what is happening to us - my husband ( who literally chokes on his grief and our daughter some may recognize themselves

Madonna said...

The loss of a loved one is a profound human experience which cannot be “managed” by attaching mental illness labels and applying drug therapy. I agree that it requires a more human response from caretakers, the “collective compassionate and open hearts” that Joanne Cacciatore alludes to in the above article.

When I was 10 years old, I experienced profound loss from the death of a loved one and the fear of appearing mentally unstable drove me to internalize my grief for 15 years until I could no longer keep it to myself. It was the compassion and love of my then husband that allowed me to finally express my loss and reach the point of acceptance.

I have to wonder if the psychiatric community isn’t creating more confusion than clarity. I have experienced depression from grief and major depression and I know the difference. I am not convinced that the professionals understand the difference at this point and I am deeply concerned that their actions will lead to more harm than good.

sandie eide said...

Someone asked me the other night if I was Ok now, if I accepted it and was over is the death of my beautiful daughter and my shining son. Yes it has been two years so I guess by "their" time frame I should say yes...the answer is most definitively NEVER...the rest of my reply would involve cuss words.

Andrea said...

Thank you for this post. After trying to find a logical explanation for the APA's decision, I think your words gave me the best answer: "We should not, ethically or morally, medicalize grief." I feel the pharmaceutical industry must be elated by the changes to DSM-5. It is truly a sad world when those who should be looking after their patients' best interest are sacrificing them to corporations' greed. It is outrageous. Thank you for your courage, for your voice.

Jane (Hollinger) Mikoni said...

I hope the professionals who compose the DSM will consider the long-term damage that comes from medicating the bereaved. When my husband died (a suicide), therapists and doctors put me on so much medication, I was unable to process the experience. In fact, a couple of times when I felt overwhelmed, I used the medications to try to end my own life. Now, five years later, I am facing my loss --a process that was delayed by well-meaning professionals who believed they were preventing my suffering.

In fact, delaying this process caused many other problems. For five years, my fears were locked in my subconscious mind, where they had the power to control or influence my behavior. As you might imagine, this diminished my

Now, in addition to finding my "self" again, I'm living with the ramifications of my behavior--car accidents, falls, etc.

I believe that those who treated me had trouble accepting the enormity of my tragic loss, so their choice to medicate me was misguided. Had someone simply listened to me when I cried, raged, and worked through this event, I think the outcome may have been different.

For the bereaved to regain some measure of control over their lives, they need to heal their hearts. This requires a clear mind and the affirmation of pain as a symptom of growth by friends and professionals.
Jane Mikoni

Anonymous said...

Fran Dorfman, MA, MSW

Anonymous said...

As a grief counselor, I also strongly oppose the removal of the bereavement exclusion from DSM-V and the application of a psychiatric diagnosis to the extremely painful, yet normal, reactions to loss. This proposed change is not backed by sound empirical evidence and does not honor the lived experiences of the bereaved. It does not help the bereaved to label their understandable pain and suffering as a mental disorder in need of psychiatric treatment.

Kara Thieleman, LMSW

Ruthie Lou's mama said...

Dr Cacciatore,

Thank you so much for posting all of the information about the proposed changes to the DSM-V and educating us on the consequences if this change is allowed to occur. This has been on my mind since the moment reading it and has been posted/repeated within my circle of friends on Facebook and those who continue to read my daughters caringbridge page since her death in September.

My beautiful daughter lived 33 days here on Earth after an amazing pregnancy and birth, a life that we looked forward to sharing with her the moment that we knew she existed. Finding out that she had a "chromosomal abnormality incompatible with life" was the worst moment beside her death that I have ever in my life experienced. I learned so much in her short life, I loved so much that I didn't even know was possible and I MISS her every single day.

It was two months before my husband could return to work, admittedly now, because he though the had to. It was four months before I returned to work and while I thought I was ready, it has been so very hard to give my energy at work as a classroom teacher and not be able to spend that energy taking care of myself and my grief.

Our society is so uncomfortable with someone's sorrow, sadness and grief. They just was to "fix it" but Wally they just want to "mask it". My grief is different every day, sometimes every moment. We are pregnant again and that brings up different parts of grief that I didn't know we're there and makes me miss my sweet girl even more. Life continues on after loss, even when we don't want it to and somehow we have to learn to live that life. Diagnosing grief as a mental disposer does not offer the compassionate care and empathy that a bereaved parent, or any person for that matter, so desperately need, the acknowledgement, the confirmation that in fact this loss is real and that the person we love, our daughter, is important.

Thank you Dr. Cacciatore for your efforts, support and wise guidance offered in your blog and by the MISS foundation. I just recently found you on Facebook and I have never felt more at home. Tis work is important, our children are important, no matter how long their lives were.

"A lifetime is not a measure of time."

Sincerely and with love,
Ruthie Lou's mama
Amie Lands

Ruthie Lou's mama said...

I am so embarrassed! I just saw that the comment has to be approved and that is why it wasn't able to be viewed! I may have tried a few times, successfully or unsuccessful, nt really sure! Sorry! Please post only once, of course!!

Qualified Therapists said...

Nice article. My youngest sister was hit by a car and killed instantly while jogging. She was healthy, happy and brought great joy into our lives. Her death came as a complete shock to our whole family.

Everyone faces their challenges differently, so treatment needs to be tailored to patients. Choosing the right therapist is important, especially for the bereaved.

Loraine Ritchey said...

I have posted your letter and linked to Dr. Frances post and a few thoughts of my own I would like to share with TPTB of the APA from a grieving mother two YEARS in ...

Joey C Johnson said...

My response to the DSM V:

I can't sit back and do nothing. My son Jack Kendrick Johnson was born August, 31, 2006. He was born premature due to Incompetent Cervix. My son Jack died September 1, 2006 due to his prematurity. Two weeks after my son died, I was in shock that this nightmare had actually happened! I wasn't sleeping, eating and barely breathing. I'm not being dramatic! When your child dies, a part of you dies. You physically hurt all over, from your toes to the hair on your head. My heart wasn't broken, it was shattered! And the pain from that shattered heart is truly indescribable! But I'll do my best...It felt like there was an elephant sitting on my chest and that elephant was stabbing me, repeatedly and sometimes that elephant would lay just right on my chest that I would actually stop breathing. I didn't notice it until I realized I had forgotten to breath and I'd take a huge gulp of air. How do you forget to breath? My arms ached like I had been lifting 200 lb weights over my head for days. My eyes felt like they had been stung by millions of bees and dried out like dead flowers. There was no running out of tears, yet open or closed, dried or soaked in tears there was no pain-free moment for my eyes. My head ached in ways I'd never felt before. Worse then the worst migraine you can imagine, Physically heavy like it had been exchanged with a 100 lb weight ball, Filled with racing thoughts; What ifs, Should haves, could haves, replaying every second from the first moment of what I thought was gas pains two days before Jack was born to the car ride home from the hospital not pregnant anymore yet no baby in the car seat. That nightmare replayed over and over and over and over and over and over and over and over and over Every Night, Every Day, Every Moment of my life for the first TWO YEARS after my son, my only child died. TWO YEARS!

Two weeks after my son died, we were picking up his ashes and his death certificate. Was I mentally ill to STILL be grieving my son's death while picking up his ashes and death certificate? That's what the DSM V will say if you do nothing.

I'm not done.

Two years after Jack died, I got that dreaded phone call! My father suddenly and unexpectedly died of a heart attack. Two weeks after my father died, I was just beginning to grieve for him because my brother and I had to keep our shit together to plan his funeral and start the process of handling his estate. Two weeks after my father died I was home sitting on my couch calling my dad's cell phone hoping to hear his voice just one more time even if it was just his voicemail. I was sitting there realizing my dad would never again call me. Never again tell me he loved me. Two weeks after my dad died, I was grieving for my dad! I wasn't mentally ill, I didn't need pills. I needed to grieve for my dad!

5 years, 6 months and 3 weeks after Jack died, I'm STILL grieving for my son!
3 years, 3 months and 2 weeks after my dad died, I'm STILL grieving for my dad!
I'm not Mentally ill, I'm human!

Anonymous said...

Great blog, wonderful post!

It is good to see that the criticism of the DSM-5 is drawing together professionals and 'patients,' advocates and radicals and institutions. This is what is needed to reform the mess psychiatry has become--again!--cooperation between all the various consumers and purveyors of "help."

Anonymous said...

Wouldn't it be terrible if people who are grieving could see a therapist and have it covered by insurance? Or perhaps time off from their jobs to grieve (medical leave)? That's what would happen if the DSM removed the grieving exception.

Dr. Joanne Cacciatore said...

Actually, "Anonymous", I'd like to ask you to prove your assumptions. While I appreciate your comment, I find it misguided. Also, if insurance companies refuse to cover services for the bereaved, then the *problem* is with the insurance companies not the bereaved person, who clearly should not be classified as mentally diseased merely to obtain coverage for counseling services. Finally, counseling is not always helpful for the bereaved. Social support is a critical feature in helping mourners endure loss. However, conflating grief with depression may actually further muddy our understanding, compassion, and ability to help as a society. Our duty is to one another, not to providers or insurance companies.

Anonymous said...

I, too, disagree with the medicalization of grief. If this change goes through, then maybe grievers who can't just "snap out of it" should apply for Social Security Disability payments, since grief beyond 2 weeks is now apparently a disability.

Sherry said...

Thank you for your wonderful blog post. Our society already has so much difficutly dealing with grief, and this revision within the DSM will only reinforce the tendency of many to view grief as a "problem".

I dealt with such attitudes starting within a few shorts weeks of losing my 14 yr old daughter to suicide. I had several people who questioned me about why I still felt an overwhelming sadness, still had crying jags, still had problems functioning in daily life. These same people also thought I was suffering from Depression and needed to seek help for this. When I asked these people why they thought I should already be "over" losing my daughter none could give
answers other than they were concerned about my wellbeing. And while I appreciated that concern, what I really needed was hugs and understanding, not discomfort and misguided advice.

I did eventually see a therapist I knew and trusted who adamantly reiforced the truth that I was not suffering from Depression. She offered support, empathy for my grief, and encouragement to allow myself to endure the process of healing by not medicating away the pain. I am now, 12 years later, still not "over" my daughter's death. I am, instead, able to find beauty and joy in life and in the memory of my daughter again even though there will always be a place of deep pain within my heart.

Anonymous said...

About 6 weeks after I lost my first baby during my 4th month of pregnancy almost 13 years ago my delivering OBGYN asked me how I was doing...I told him that there was a day or two when I could not get out of bed except to use the restroom. I had trouble eating and just wanted to sleep. He looked at me said "oh well you are depressed" and proceeded to write me a prescription for an antidepressant. He did not give me any information on therapy or support groups, he didnt even ask if I was feeling better since the "episode". I was shocked and just sat there staring at him. I have never been one to take pills just to take them (in fact I was forced to take home some vicodin after a c-section last year). I did not fill the prescription because if I need them I want them to be prescribed by someone who has talked to me for more than 5 minutes and is using them simply to get me over the hump so healing can continue not as a fix-it-fast tool. It has been 12 years and 4 months since my sweet baby boy left this life and I still have bouts of "depression" and cry fests over him. I have never seen a psychologist or therapist and now I dont think I want to for fear of being judged in my grief.

Joan said...

I didn't know that I was mentally ill; I do know that grief has no time period. After the death of my first child, age 35, I wasn't able to function for more than 2 months. Had no idea that I could have been diagnosed as suffering from a mental disorder! I just thought I was suffering profound grief; and, I am still grieving - will continue to do so until the day I die. To repeat your own words, "there are no words in the English language that can adequately describe the daily struggle . . ." and no one knows this better than parents who have buried a child. Ten years after Karen's auto accident, my second daughter, age 42, died from a long illness. So if I wasn't crazy after the first lost, surely I must be crazy now? No, they have it wrong. Each of us who have lost a child and have to make this grief journey know that it is a struggle each day. That doesn't mean that we can't still function - still find joy - still be productive - and all without PILLS!! The whole idea that they can put any time period on the grieving process is in itself ridiculous, but two weeks is ludicrous; simply beyond belief.

Stephanie V said...

I wish I knew you in "real life." Thank you for your blog, your words and your spirit!

Dr. Joanne Cacciatore said...

Thank you so much Stephanie V., and all, for sharing here.

tjordan12 said...

Thank you for being this voice of wisdom. As a psychiatric nurse practitioner I often face the dilemma of seeing patients who believe they will find a medication to "fix" them. While I do support the use of medication in some situations, I fear that we have started to overpathologize normal human emotion. Your blog is an encouragement to me to try to provide more of what my patients really need.

Jeanette Bartha said...

A powerful article. Thank you for trying to make the DSM-5 a reliable tool. We tried, but the committee had too much invested to listen. Got money?

iRustin said...

Oh!!! I just read all of the comments under Joanne's Blog post! Now I am filled with sadness, compassion and overwhelmed by the depth of suffering experienced by those who lose a child to death.
I cry in bed, almost unable to move.
I have helped hundreds of people cope with loss, my head knows many things to say that are helpful but I am speechless at the reality my heart confronts with these parents recounting their grief.
The DSM did not kill their children and the authors never intended to offend or cause anyone pain. Labeling or pathologizing the process seems minuscule in importance compared to the darkness of suddenly being without a child.
The story of Kisogatame in the Buddhist scriptures always gave me a place to start understanding loss, and the worst loss - the loss of a child, but I understood with my head, now I must understand with my heart.
As Kisa walked from village to village carrying the body of her dead child, and asking for something that would help she hear the stories of loss.
She eventually understood that she was not alone in her loss. And she was healed.
Hearing these stories of loss is not healing me yet, but I trust the process and I will keep listening.


The soul still sings in the darkness telling of the beauty she found there; and daring us not to think that because she passed through such tortures of anguish, doubt, dread, and horror, as has been said, she ran any the more danger of being lost in the night. Nay, in the darkness did she, rather, find herself.

--St. John, Dark Night of the Soul

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