A diabetic isn’t considered weak for taking insulin. Why am I looked down on for taking medication to help my mind function?
The right to take psychiatric medication — without having to justify it — ranks high on the anti-stigma agenda. There is a long way to go in achieving true mental health parity, but the frequency with which I see this particular plug leads me to believe that we’re making headway.
So now I ask that same community of mental health advocates to expand your open-mindedness in yet another direction: my right NOT to take medication.
Getting On the Medication
I began treatment in December 2013 carrying diagnoses of full-blown anorexia nervosa, depression, anxiety with panic, self-harming tendencies, a trauma history, and an overall diminishing ability to function, all of which was buried beneath thick layers of denial and extreme reticence.
On Day 1 the staff psychiatrist recommended an antidepressant medication (mind you, I was critically underweight, which usually renders SSRIs ineffective). I was uncomfortable with the idea of medication, partly because I had doubts about whether my mood disturbances — which were supposedly the target of the SSRIs, since antidepressant medications don’t “treat” anorexia per se — were, in fact, “organic,” or whether they were the result of starvation.
I decided to hold off — until I tried to admit to a residential treatment facility and my insurance company refused to pay. According to Blue Cross Blue Shield, my reluctance to take medication equated to noncompliance with treatment. And why cover a residential stay for a noncompliant patient?
There was no time to dwell on this medical blackmail. Desperate, I filled the prescription — Sertraline, commonly known as Zoloft — hoping this would at least buy more time to think and explore my options. I brought the pills with me when I finally was approved to go, but I still was not sold on the idea.
On Day 1 at the residential facility, the conversation resumed, this time a bit more acerbically.
What do you have against medication?
The Research shows they are safe and effective.
No, it won’t cure your eating disorder, but it will treat the underlying mood issues.
Yes, those might be prompted by malnutrition— but they might not.
Is your husband pressuring you against taking them?
Worn down and confused by constantly being on the defensive, I eventually started Zoloft. My treatment team assured me it would be a six-month course — MAYBE a year. This would get me through the most difficult part of the process, and lessen my anxiety so that I could fully engage in the hard work of recovery. Then, once I had my footing, I could begin weaning off.
Getting Off the Medication
Two and a half years later and still taking medication, I’m looking back at an unrelenting battle not only with my eating disorder, but with every one of my psychiatrists. (I’ve worked with five, and there was a sixth I visited back in college.)
I’ve done everything that has been recommended to me, albeit not without some (and at times, a lot of) debate: I began medication; I doubled the dosage; I increased it another 50 percent; I went up to the highest possible dose. By the end of it, my sex drive was nonexistent, my sleep was punctuated by night sweats, and I still had no idea whether this medication was doing anything — or whether it had ever done anything at all.
Back in December 2013, my husband, a neurologist, cautioned me against getting “sucked into” the medication roulette. He recalled his psychiatry rotations, first as a medical student and then as a resident physician, when there was usually a single objective for the new admissions: get the patient to agree to medication.
From Bellevue to New York University to his current position at an Ivy League hospital, it has always been the same. Start them on something. If it doesn’t work, switch to another. Titrate and reassess. Add a second medication. There will be no test or neuroimaging to verify when one medication starts (or stops) working, but as long as the patient reports improvements, the job is done. The evidence begins and ends anecdotally.
Besides this haphazard methodology, his concern with antidepressant medication is The Research that my doctors cited to me. This research, he explained, does not have such crystalline results as psychiatrists purport. The most recent studies on SSRIs — randomized double-blind clinical trials, i.e., legitimate research — show clinically significant improvements only in the most severely depressed patients. For patients with mild or moderate depression (like mine), the medication had no greater efficacy than placebo (“minimal or nonexistent” were the words used in the Journal of the American Medical Association).
The question, of course, is: Does that matter? As long as I feel better, who cares whether the credit goes to the actual medication or to a placebo effect?
It matters, he said. These trials were short term — two years, at the most. There are no longitudinal studies showing how long-term SSRI use affects patients down the road. And since I was roughly one major depressive episode away from qualifying for an indefinite course of medication (see Dr. Anthony Rothschild’s comments in section four of this article), I’d better be sure this was worth the gamble.
These worries were in the back of my mind when I told my psychiatrist last winter about my worsening side effects. She recommended switching to a different medication.
“Prozac is very good for anxiety,” she said. I asked her how it was different than Zoloft. “We don’t really know why some people respond to one medication better than another. But I’ve seen it work.”
We don’t know why… We just know it does…
She said this, and it was as if she had pulled back the bottom branches on the decision tree we were climbing down, revealing a single answer carved into the trunk. Unless I reported that I was feeling great and my symptoms had vanished, I could make no statement that wouldn’t end with her reaching for her prescription pad. I had the sinking feeling I was looking at another two years of this trial-and-error, shot-in-the-dark approach to medicating whatever was supposedly wrong with me.
With that, I was done. I told her I wanted to stop. We debated for the rest of the session, then she told me to come back in a week (we usually meet monthly) to talk about it more. I joked, “Do I just keep coming back until you convince me otherwise?” She didn’t laugh.
A few weeks later, I began the process of weaning off the medication by myself.
Psychiatric Patient Autonomy
This is a contentious issue. Emotions are high; lest they obscure the issue at hand, I want to be very clear about what I am saying and what I am not saying here.
I am NOT saying that psychotropic medications have no place in the treatment of mental illness.
I am NOT saying that everyone who takes medication has been coerced or duped or hasn’t done his or her homework, nor am I saying that every psychiatrist is a cold-hearted pill-pusher.
I AM saying that psychiatrists have been backed into a corner by managed healthcare, which has stripped their job to its pharmacological foundation. It is easier and cheaper to medicate patients than to spend time counseling them. That is what insurance companies pay for and, hence, all that most psychiatrists can offer patients.
I am also saying — and this is my main concern — that the use of medication as part of psychological treatment has become so normalized that the attitude is fast approaching medication as a thoughtless given.
This attitude has seeped into the wider mindset, too. A cousin of mine recently lost both of her elderly parents within a week and a half of one another. She wrote on Facebook that she was feeling intense anxiety and was having trouble sleeping. Within minutes, half a dozen friends had left comments saying she ought to ask her doctor for anxiolytic medication, “just to get [her] through this tough time.”
I was floored. Is that truly the common attitude? That even a situation so understandably painful would warrant medication? Our bodies know how to grieve. Except in rare cases, such as prolonged or traumatic grief, they do not need help. You certainly can help them, just as you technically could stitch a small laceration. But it’s not necessary.
The upshot of this ultra-normalization is a dangerous one. Our views about medication swing toward the opposite pole, and suddenly expressing hesitation or doubts about medication becomes the outlandish stance. To the psychiatrists I have seen, my reluctance is not considered due diligence, but obstinacy. Patient noncompliance. Patient trying to wrest back control. The responses I get range from exasperation to personal offense — as if my rejecting medication is an outright rejection of this doctor and his or her training.
My husband and an attending physician recently conducted a follow-up appointment with a woman newly diagnosed with multiple sclerosis. She told the doctors that she had decided she didn’t want to take the recommended medication. To her, the potential side effects outweighed the suffering her illness was presently causing. The doctor disagreed with her choice, but acknowledged it was just that: her choice.
So tell me: Doesn’t this autonomy also belong in our psychiatric examining rooms? If I am an intelligent person who is of sound mind (that is, not delusional or psychotic), has done her research, and has spent a long time undergoing this process, why are my choices questioned so vehemently?
Why DON’T I Want to Take Medication?
I put these thoughts at the end, because I don’t need to justify my decision to discontinue medication. I want to, nevertheless.
Medication, I’ve been consistently told, is not a “cure,” but a buffer. It is the difference between treading water and being thrown a life preserver: I may be a decent doggy-paddler, but why exhaust myself staying afloat when help is a few yards away?
Fair. But we acknowledge, then, that medication is a temporary fix. A band-aid blindly stuck onto an invisible wound.
I’d prefer not to cart around a life preserver for the rest of my life. I would much rather learn to swim to shore. And I’ve done that: I’ve spent two and a half years learning to swim. It’s now time to get out of the pool and head to the ocean.
I need to learn how to live inside my own brain. Thankfully, this isn’t a brain that’s afflicted by severe mood or psychotic disorders, for which a lifetime of medication may be required. Mine is a brain that adopted certain coping skills during adolescence in order to survive a traumatic experience. These skills worked when I was 14 but have since stopped. My work now is to undo those old habits by learning and practicing (“practice” being the operative word here) more productive skills. No pill can do that work for me.
This isn’t rash thinking. I’ve come to know MY depression and MY anxiety intimately well, and I don’t believe that either occurs ex nihilo. My depression has historically been the consequence of malnutrition in the setting of anorexia. My anxiety, unfortunately, predates my eating disorder, and much of it is inscribed on my personality. Since my personality will not be radically shifting any time soon, I’d best make peace with it.
My adult life has been spent either malnourished or medicated. I am only just starting to understand my emotions, with all their oscillations and occasional volatility. I find something rather beautiful about them — beautiful in the way that a bird’s-eye view of an overcrowded city is beautiful. Up close, the streets look like a tangled, dangerous mess, but they come together to create a complex and fascinating pattern.
Like it or not, that labyrinthine city is my home. Reroute those pathways and you risk cutting off the hidden gardens and cul-de-sacs that give it character. You dim the lights that might otherwise have guided you to the secret places one finds by daring to explore the darkness.
There is too much unknown about how these pills are altering my brain chemistry, and I will not blunt what is rightly mine. Plus, if I am indeed going to take the adventure of learning to live with myself as I am, then what better time is there than now? I have a multidisciplinary support system in place. I have no children yet. I have colleagues who know about my struggles and who are heroically forgiving of me when I get in my own way. I have a loving husband who has promised to love me in sickness and in health.
It’s time to remove the band-aid and allow the wounds to breathe.
© The Middle Ground, 2014 to present. Unauthorized use and/or duplication of this material without express and written permission from this blog’s author is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to the article’s author and The Middle Ground with appropriate and specific direction to the original content.