My work in supporting and loving parents whose children die or face death is hard but rewarding work. I can think of no more tragic privilege than to accompany them into the abyss of despair and remain there with them, when they need a witness to their suffering, until they are ready to emerge to the other side. The emergence is often followed by a resubmergence into grief at some point again because… that is how grief works. Grief is an ebb and flow of emotions. I see my role in helping these parents feel safe enough to explore the darkest passages of grief when their child/children die.
However, all too often, as Dr. Jeffrey Lacasse (FSU) and I discovered in the TEAR Study, parents are prescribed psychiatric medication — wantonly and inappropriately, in my opinion — primarily because medical providers are unable to cope with the trauma of child death. This has caused me much consternation as for years I have vociferously opposed the medicalization of grief in any iteration of the DSM.
Indeed when my own child died in 1994, several providers encouraged me to seek psychiatric treatment for my despair and despondency. I remember clearly saying that while medications may take the edge off, I wanted to feel the intense grief, I wanted to cry and weep and protest, because our love, inimitable, was worth every tear I shed. I continued to feel isolated from others primarily because many urged me to “move on”, “stop focusing on the grief. They said, “it’s time to “get over it”, “choose healing”, “just be happy”, and yes, even the “give it to God…” Needless to say, those trite platitudes were not a source of solace; rather, they further distanced me from others, expanding the chasm of myths and misunderstanding around grief and loss.
The social environment – and the pathologizing of my normal sadness and grief, albeit enduring and intense – heightened grief and contributed to unnecessary suffering. Indeed, researcher Dr. Vanessa Juth found this in a recent study confirming what I already knew from working with bereaved parents for nearly two decades. Social constraints in bereavement, particularly for women, the young, and the poor, are the most salient predictors of poor adjustment, global health outcomes, and psychological distress.
Sadly – tragically actually — because the bereaved are vulnerable to the intimations of others, particularly from within the medical community, they often succumb to misinformation and questionable, sometimes compulsory, prescribing and treatment practices which add even more trauma to their already existing trauma. I’d like to share a letter recounting the experience of one of the parents with whom I’ve worked after the deaths of her precious twin sons. Her list of medications? Depakote, Elavil, klonopin, lamictal, lithium, lorazepam , pamelor, paxil, Seroquel, Zoloft, and Zyprexa. Why? Here is her story:
Last night when I was talking to (name removed) about meds and explaining the events that occurred when I tried meds before, the more I talked, the more I realized I forgot about the progression of my life when I was put on meds the first time. I verbally walked (name removed) through my first round of meds and why I was put on them and as I kept talking, I had a slight epiphany about me … I AM NOT CRAZY, NOR WAS I EVER CRAZY, SO I SHOULD HAVE NEVER BEEN PUT ON MEDS IN THE FIRST PLACE.
I was first put on anti-depressants when I was 19 years old after coming out of a physically abusive relationship. My family doctor put me on my first anti-depressant and I took the meds for only a short period of time. In 2003, I got married to my first husband and a month after we were married, I realized I had made probably one of the biggest mistakes of my life. I didn’t want to be married, I felt like I had lost my sense of self, I felt like I had conformed to the expectations of others in getting married and I was unhappy. I spent time either shopping to fill the “emptiness” of my marriage or I spent time crying about the direction my life took. After a while, my husband had enough of my ups and downs and let me know I needed to get psychological help for my behaviors or else. So, I sought out a psychiatrist for medication. Based on the behaviors I was displaying, I was diagnosed as Bipolar and was given Depakote and another anti-depressant to control my moods. Little did I know the meds would become my moods.
There is so much more to my story including a vicious cycle of meds leading all the way up to Lithium. While I was talking through my progression of meds with (removed), many memories surfaced that I had pushed away and when I connected the pieces of the past 10 years, everything started to make sense in the most sick way. One thing I did share with (removed) that I haven’t shared with anyone ever was the experience I had when I was admitted for five days to the psych ward of my local hospital…my husband had me admitted to the psych ward because the Depakote I had been taking wasn’t alleviating my “symptoms” and I was showing signs of suicidal tendencies. I spent five days in the psych ward completely drugged up and when I was released, I was put on a new cocktail of meds, Lithium and something else I can’t recall what it was.
I took Lithium up until I got pregnant with the boys. I went through terrible withdraw from the meds when I was taken off of them but after they were out of my system, I felt like I had never felt before…AWARE! After the kids died my psychiatrist put me back on the Lithium and upped my dose because not only was I a bipolar patient, I was a “bipolar” bereaved patient. After going back on the Lithium, I started experiencing the same thoughts I had experienced the first time I went on the Depakote. I was suicidal and not from my grief. I felt my grief and I knew what I was feeling wasn’t from the grief. There were days when I felt like I was crawling in my own skin, going crazy in my head, and what I was feeling had nothing to do with my grief. At one point I went to my doctor and told her I didn’t want to take my meds anymore because no amount of medication would bring the kids back. She insisted almost all “bipolar” patients think they don’t think they need their meds and attempt to stop taking the meds with little success. She cautioned me about not taking my medications. I explained to her I didn’t think I had been correctly diagnosed from the very beginning and I felt the medications had done more harm than help.
Against her wishes, I stopped the Lithium and as expected, went through a little bit of a “detox”. April 25th will be six years w/out any type of medications for me. I set my quit date for April 25th, the boys diagnosis day.
Dr. Jo, in knowing what I know now about psychiatric care and medications, I should have never taken my first antidepressant at the age of 19. I remember feeling suicidal the first time I took anti-depressants and I thought it was because I had a chemical imbalance in my body. Nothing was wrong with my body except for the multiple breaks and bruises my ex-boyfriend had “gifted” me with. But, instead of working with a counselor who could walk me through the emotions I was feeling as a teenager, I was given a pill and told not to feel anything. Then at age 28, because I rebelled against the institute of marriage, I was once again put on a pill to fix what I was feeling. So, here I am at age 40, still grieving my two kids and “people” are telling me I should try meds to help with my depression. Why does every emotion need to be fixed with a pill? It seems I’ve never been allowed to just feel what I have needed to feel without getting a pill thrown at me. One pill almost killed me, literally.
When (removed) asked me why my husband put me into the psych ward, it took me a minute or two to remember why. Then I knew…I talked to him about wanting to die so that’s where he took me so I wouldn’t. Back then, I didn’t know psychiatric meds could cause more harm when used inappropriately. I didn’t know they could cause suicidal thoughts and reactions so I thought I was in fact very crazy. I let everyone else tell me that going against the norms of society was abnormal so therefore I was.
It hurts my heart and tears well in my eyes as I sit here writing this to you. I don’t know why I didn’t put all of the pieces of the puzzle together before. But now, they are together and I am so sad for the me who begged and pleaded with her husband to take her home from the mental hospital, crying and explaining that something was wrong but no one was understanding. Dr. Jo, if I wouldn’t have had S and G, I wouldn’t have stopped taking the Lithium and who knows where I would be today. I’m sad I’m here without the kids but I swear by it, they saved me. Even in my darkest days of grief, I know what I am feeling and understand it is the pain of a breaking heart, not the inability to mend my broken heart.
Pills, pills, pills. Yet, some idiots want me to take more pills because I’m still sad after seven years of losing my own precious children. How dare they wish my sadness away with a pill because they are uncomfortable with how I grieve.
I love you. I’m thankful for all you have taught me and all I still learn from you. I’m sorry if my words were choppy in this message but my head is running on overtime to process the progression from then until now. To the first doctor who gave that 19 year old abused girl a pill to help her feel better after her boyfriend had thrown her from a balcony … SHAME ON HIM!! To my ex-husband who told the doctor my free-spirit wasn’t anything but a mental illness … SHAME ON HIM!! To the doctor who gave me Depakote and after seeing my apparent weight gain from it told me I needed more … SHAME ON HIM!! To the doctor who gave me Lithium because the other meds hadn’t helped my “bipolar” symptoms…SHAME ON HER!! I am shaming people all over the place today.
That’s it for now. My brain and heart hurt today. I’m days away from G’s anniversary (also my six year anti-medication anniversary). How have my precious ones been gone for seven years? And how I am still here without them? I don’t know the answer to either of those questions. I really don’t. I’m just here doing what I can to make it to there with dignity and grace and love.
Indeed. This grieving mother is working hard, as those who suffer deep pain and loss must, to cope with the aftermath of their deaths, as well as trauma suffered at the hands of others.
But it begs the question: Was there something wrong with her? Or was there something wrong with a culture that failed to treat an abused woman, a grieving mother, with the love, compassion, remembrance, validation, and kindness that she and her two boys so deserved?
Thank you for sharing your brave journey with us…we must continue to get the word out about the risks of psych drugs….and the way grief is diagnosed as an illness….so wrong….
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There definitely is a problem with the psychiatric industry drugging women and children in distress. I was misdiagnosed (according to the DSM) because I thought 9.11.2001 was disgusting. And, according to my medical records, because “Pat didn’t like her.” I had no idea psychotherapy was nothing more than gossip masquerading as medicine. My child had uncharacteristically kicked and screamed and refused to get in Pat’s car. I was eventually handed over the medical evidence of the child abuse by some decent nurses. Shame on doctors who drug distressed mommies (or children) to cover up medical evidence of child abuse, rather than going to DCFS, as is legally required.
But given that the most common trait of all schizophrenics is “adverse childhood experiences,” and that the neuroleptics actually cause the schizophrenia symptoms:
“neuroleptics … may result … the anticholinergic intoxication syndrome … Central symptoms may include memory loss, disorientation, incoherence, hallucinations, psychosis, delirium, hyperactivity, twitching or jerking movements, stereotypy, and seizures.”
One has to wonder if profiting off of covering up child abuse might not just be the number one cause of schizophrenia, or in my case, “bipolar.” Medicating distress is wrong. And I agree, “there something wrong with a culture that failed to treat an abused woman, a grieving mother, with the love, compassion, remembrance, validation, and kindness.”
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Extremely poignant and all-to-typical account of how ordinary people become trapped and victimized by the downward spiral of psychiatric drugs.
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Very powerful. This is the kind of thing the mainstream media should be reporting, not the drug company propaganda.
What isn’t mentioned here (because you can’t mention everything, of course) is that after all these drugs, this woman now still has to process her grief. If the shrinks had left her alone and helped her to get the emotional support she needed, she would by now have been able to come to terms with her grief. The past doesn’t go away, you can only come to terms with it.
But there is another important point I want to make, and I hope MIA doesn’t remove it. This assertion by psychiatrists that one has only 15 days to “get over it” betrays a very chilling worldview. How can one “get over ” this in 15 days? The answer is, only if your relationships with other people have no depth or strength at all. The average psychiatrist seems to see their clients, and other human beings as profit centers, to be drugged and exploited, not as fellow human beings to be cherished and nurtured.
I would like to be able to ask them publicly how long it would take them to “get over” the death of someone close to them.
If they answered, which I think is probably true for most of them, just a short while, what does this say about the moral character of psychiatrists? About their ability, or willingness, to be connected with other people? The profession, with the help of drug company PR money, has succeeded in portraying themselves as godlike omniscient figures we should model ourselves after. Psychiatry has become a kind of cult, a cult that demands human sacrifices.
Surely, when one compares what psychiatrists on the whole actually do, with the misplaced trust and belief people have in psychiatry, there is a great gap. The public believes in psychiatry in spite of what it actually does.
It is scary to see this, but unfortunately it is the reality. Religious beliefs are hard to challenge, but I think that is one of our tasks,as we struggle to replace psychiatry with real help for people in distress.
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I’m so with you Ted. I am all for exchanging our current systemic dehumanization for a more compassionate and loving approach to those who suffer. Surely, we can do better. Surely.
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Are you suggesting that the authors of the DSM fit the description of a psychopath…? Well you’d be right.
We are not allowed to feel anything anymore. If having feelings is abnormal, what is normal? Grief, sadness, at times anger etc. come from our humanity.
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Can’t think of a better example of how we, as a society, have truly lost our way. Indeed, how could a culture medicate such things as wounding and trauma from abuse and extreme grief from losing our children? Well, we do, and it is beyond my ability to comprehend as anything sound, reasonable, compassionate, loving, and at all helpful. It doesn’t even seem logical, and only adds to one’s burdens. Truly mind-boggling. What will it take to re-claim our humanity?
Thank you for this powerful piece. Really lays it on the line.
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Alex,
Thanks for the comment. I’ve been pondering that question all day… what will it take? What? I suppose ISEPP and MIA exist for the very reason… There is hope, I hope.
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Hi Joanne, yes, this question stuck with me, too, and sitting with it, I felt more than hope, but actually certainty. It just sort hit me as I was thinking about this. Interesting how things can be right in front of us and we don’t see it right away, until we re-focus and allow present time to enter our awareness more fully.
I think so many of us who have ditched all of this psychiatric, drug-related, diagnostic-oriented, therapy-minded, ‘mental health system culture’ stuff and have succeeded in moving forward away from it, following our own hearts and intuition while creating a new kind of creative entrepreneurship around support and helping others, and bringing with us new healing information, dark-night-of-the-soul wisdom, as well as our own personal self-healing and transformation, is actually the hope, and at this point, it is evident.
I have witnessed this a lot on here, and it’s my own experience, so yes, indeed, MIA has been important to me because I found others like me, who got away, got ourselves together, and are applying what we’ve learned from the rather grave mistakes of our predecessors, doing the best we can to create something way better. It’s new territory, we’ve broken ground. I think we’re covered just fine if psychiatry goes down, many of us are prepared to usher in new and humane healing and perspectives.
I think that’s been a giant leap in the right direction, and why I do feel there is all the reason in the world to feel optimistic at this point. We, ourselves, are the evidence, as we grow in numbers in this category.
Personally, I’m excited to see where this is going at this point, as more of us transition into a more suitable path toward relief from grief and suffering in favor of inner peace and integral well-being. I believe this trend will catch on and at some point, it will become exponential. I think the underground railroad is open, and it’s not so underground at this point! There are many platforms from which to enter, quite visible.
Thanks again for sharing this incredibly moving and courageous story. It led me to wonderful clarity and new optimism.
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As a retired hospital chaplain I know that the one thing that most Americans are deathly afraid of is death itself. Most Americans will do everything within their power to deny death and all the things that come with it, including the grieving of the loved ones left behind from a person’s death.
As a society we do not want to be reminded of our own mortality so we deny and pretend and refuse to look at and accept the reality that we will not live forever. We can’t even deal with aging and getting old so how in the world are we going to deal with death. Have you ever noticed that the one thing that you never see in a hospital are dead bodies? You’ve certainly passed them in hospital corridors but never realized what was on the bottom shelf of that empty gurney being pushed in the opposite direction, that gurney draped with a large sheet so that the gurney is covered to the floor. Every hospital has a morgue. Almost no one knows this. Most people who work in hospitals don’t even know where the morgue in their particular hospital is located. It’s usually well hidden and unmarked except for the staff who work there. So, even in hospitals where death is a common and natural event and experience we pretend that it doesn’t exist.
The dead used to be washed and dressed at home and waked in the living room. This was normal. Now we have an entire industry, with offshoot industries, devoted specifically to the taking care of the dead so that families no longer have to do this. We shun death and everything about it.
So, if we’re this afraid of death, and our own dying, we are certainly not going to abide having to deal with anything that reminds us even remotely of this very natural part of life. We will not abide people’s grieving because it reminds us of our own mortality. We stifle and stuff peoples’ grieving in very subtle ways that seem to be motivated by concern for the welfare of the one grieving but in reality the hugging and handing of Kleenexes is done to stifle the crying because it makes us uncomfortable. And if you are the rare individual who knows that you should not touch the person who is crying because this stops the process, the rare person who knows to just sit there and keep your mouth shut, and just “be” with the person in their anguish, you get accused by everyone else of not caring about the poor person who is grieving! We say stupid and inane things to those in the grip of grief, not to convince the grieving person that things will be okay, but to convince ourselves that things will be okay. Anytime the person tries to talk about their grief we either don’t have time, all of a sudden, to listen, or we begin saying those pious platitudes that mean nothing, and we even talk over them and encourage them not to get themselves worked up. After all, the grieving person needs to get a grip, get themselves together, and move on with life; all for their own good, of course!
Joanne, thank you for sharing this very powerful letter from this grieving mother.
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Stephen- thank you, thank you, thank you. Thank you. Deep, deep bows.
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Joanne, a wonderful article. I feel like I’m probably repeating myself. My father practiced pharmacy for 50 years and had a D. Pharm degree. He would agree 100% with the thrust of your article. When the first school shootings began taking place his first reaction was, “I wonder what psychotropic drugs the kids were on, or which ones they were coming off of…”
This man, my best friend, died at age 91 in my own home. Up until a few months before he lived on his own and worked outside on his 65 acres of land. He never took prescription drugs.
As a minister, I have seen people who have run away from grief through all kinds of ways. Our culture has taught us that embracing our pain is to be avoided at all costs. When asked, “How is she doing?” of a grieving mother, folks usually respond with “not too well” or “she’s doing good” based on their own comfort levels of the person’s grief expressions. My constant refrain is, “I cannot understand what you are experiencing, but I know you must experience it.” Loss is a raw wound in our hearts and we must allow the healing process (grief) proceed as it should. In the end, we will not “get over it” but we will have a scar–we can function with a scar. It will throb at odd moments. Pain may even revisit. It will always remind us of our loss–and we should never, ever forget that loss. We should never ever try to run from it. That loss has been integrated into our hearts just like scar tissue is integrated into our bodies. It will stay with us as long as we live.
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There is much truth and compassion and wisdom in your comment Darryl. Thank you for sharing this.
You are so right: It is often the discomfort of the Other that dehumanizes human emotion- grief- for the griever.
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