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?