Are You Grieving? Have a Pill.

I am pretty numb these days. I find myself not thinking of Weston very much because it is just too painful when I do. Probably because I had just discovered I was pregnant this time last year, my body is playing tricks on me: my scar hurts constantly, and I feel kicks several times a day, as if I was several months pregnant. So I'm going to talk about something a little removed from Weston today; it will just be easier. This is actually a very important topic that will probably be applicable to everyone at some point in their lives.

The DSM (Diagnostic and Statistical Manual) is widely used by psychiatrists to diagnose their patients' conditions. The fifth edition, or DSM V, has just been released. It is quite controversial in that it pathologizes normal human experiences ranging from toddlers' temper tantrums to grief over losing a loved one.

Now, I would take the DSM and hit over the head with it any psychiatrist who dares to diagnose Caroline with some kind of disorder because she has tantrums. But obviously, it is this second human experience that I am going to discuss here. First, some background.

Most of us know that clinical depression exists. It can be a life-changing diagnosis/condition that is often treated with medication (another topic worthy of much discussion, but one with which I have no personal experience). The DSM lists certain symptoms associated with clinical depression, such as sleeplessness, loss of appetite, extreme sadness, thoughts of suicide, etc. Psychiatrists can then diagnose depression and develop a treatment plan for the patient.

At issue with the DSM V is the bereavement exclusion. Practitioners noticed that many of the "symptoms" listed above were experienced by people who had lost loved ones. Further research has confirmed that the loss of one's child presents unique and extraordinary "symptoms" that usually take many years to resolve. So, earlier editions of the DSM provided a bereavement exclusion, which meant that patients who had lost loved ones were not diagnosed with depression. The DSM III provided a one-year time period. In other words, a patient would not be diagnosed with depression unless his/her symptoms persisted beyond one year of the death. The DSM IV shortened the time period to two months (!), and the DSM V has shortened it again to - wait for it - TWO WEEKS.

Therefore, if I were to visit a psychiatrist right now, less than seven months after Weston's death, I would probably be diagnosed with major depressive disorder and sent home with a prescription for Prozac. The same would have been true halfway through August last summer.

(Please note: I do not mean to generalize or demonize the practice of psychiatry. I have almost no personal experience with it. I only point out that, if used in the way described, the DSM V will be very harmful to bereaved parents, and probably many others.)

What is wrong with this, you might ask? Well, additional research has shown that medication is, at best, ineffective at "treating" grief and, at worst, quite harmful.

My child died. I am sad. Being sad does not make me mentally ill. Popping a pill will not make my sadness go away; it will just numb me so that I cannot experience the range of emotions that accompany grief. Grief is part of the human experience. It is an unpleasant part, but a part just the same. Grief is an expression of love; why would I want that taken away from me?

What we bereaved parents need is not a bottle of pills, but listening ears and non-judgmental support. I have experienced both alternatives to some degree.

On the day I turned 22 weeks pregnant, I received very bad news while lying in my hospital bed: my condition was worsening. I was probably going to go into labor early, and my baby would die. There was no predicting when it would happen, so we just had to wait it out. I had to wait for my baby to die. Obviously, I was devastated, and I'm sure my perinatologist did not enjoy the conversation either. However, he ignored my distress and offered me a sedative and/or sleep aid to "wait out this uncomfortable situation." Then he left. I was left to process this devastating news alone.

I was completely hysterical. Who wouldn't be? But I didn't need a damn pill; I needed to talk to someone. I was not mentally ill; I was grieving the probable loss of my CHILD. I was acting human.

Thankfully, my nurse came in later that morning, and we talked. I swear, that woman is an angel. My words will never be able to express how grateful I am for her love and words of encouragement.

But I was also still pregnant, and Weston was still alive. I was very hesitant to take a pill. I ended up taking one sleeping pill, because I had hardly slept the night before (my ultrasound had occurred the day before, and I knew the results were not good).

Meanwhile, we all know that Weston did not directly succumb to the predictions: he was born alive, and we had him here for three weeks.

Fast forward five weeks to an infinitely more awful day: the day Weston died. (I still think it's all a bad dream sometimes, that I'll wake up with my chubby little baby boy beside me.) By then, I was not a patient anymore, and we were in the care of the NICU. At some point during that nightmare, the NICU social worker handed me a folder of papers. Knowing that I would not be able to read them for a while, she said something like, "The MISS Foundation is wonderful. You should look at their pamphlet."

As any regular reader of this blog knows, the MISS Foundation provides support and companionship, not pills, to parents who have lost children. I somehow made it to one of their meetings three weeks later, and the rest is history. They matched me up with a counselor, who has never offered me a pill. The emotional support I have received and continue to receive in the wake of Weston's death has been lifesaving and life-changing.

No big deal, you might think: I would just refuse any offer of pills. This is infinitely easier said than done. Anyone who knows me well knows I have no trouble standing up for myself and speaking my mind. In the midst of extreme grief, though, this resolve is gone. I would have done anything anyone told me to do. I am still vulnerable to that, especially if I am not constantly working through my grief, either from this blog or talking to my counselor and others.

For example, around the same time as I got the bad prognosis at 22 weeks, my midwife suggested further testing so I could terminate the pregnancy if something was wrong with Weston. Normally, I would have given her a piece of my mind and fired her on the spot. Instead, I just meekly assented to everything she was telling me.

And I took the sleeping pill. In retrospect, I would probably do that again; Caroline was coming to see me in a few hours, and I couldn't let her see me in that state. I got some much-needed sleep and was more clear-headed afterwards. Medical staff continued to offer the pills, and I refused.

If, after Weston's death, I had been offered Prozac instead of the MISS Foundation, there is no doubt in my mind I would have taken it. I did other things I would not normally do as well. I just had no resolve, no presence of mind to think for myself. As a fellow bereaved parent recently said, "If someone had told me to walk down the street naked, I would have done it." Ditto.

I have said over and over that I simply got lucky. Or, God was watching out for me. Whatever interpretation you prefer. Because I have no doubt that I would be infinitely worse off if I had been on medication all this time, rather than walking this horrible road with wonderful people.

Removing the bereavement exclusion from the DSM V will have devastating consequences. In addition to living with the death of their children, the parents who are diagnosed with depression will (1) not get the help they need; and (2) possibly suffer from the stigma of being diagnosed with a mental illness. (The stigma attached to mental illness is a wholly new, and vitally important, topic.)

If you want to know more about the DSM V and the many problems with the removal of the bereavement exclusion, read this, from someone who has been walking this road for eighteen years and has devoted her life and career to walking with other parents who have lost children.

To end, I'll borrow a quote from the above link:

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