I’m a 29-year-old man with a story I’ve been wanting to share for a while now. It’s not a story of misery or desperation, for which I am every day grateful. More a story of dissatisfaction, occasional crisis, and a desire to understand this whole affair of mental health.
My upbringing was all a person could ask for, a loving and stable family and a fair degree of academic success. If anything was missing, it was simply the acknowledgement that sometimes people get depressed, anxious, or otherwise mad, and that madness in itself is a natural part of life, for some of us more than others.
As a kid, then teenager, I was sufficiently busy aspiring to be ‘normal’ like my family that I didn’t really try to tackle the idea that there might be a label for me. Not until I started university, and started to leave my classes halfway through due to panic attacks. So I went to the first and only place I could think to go, the university clinic. I lucked into a very good GP there, who suggested to me the labels of Major Depressive Disorder and Generalized Anxiety Disorder- I carried those terms around in my back pocket for several years, sometimes as excuses, but more often as a means of convincing myself that I was not broken, or at least broken in the same way as many other people were.
Looking back I realize a lot of things: that I was never actually formally diagnosed with anything; that both of those ‘disorders’ are actually as common as dirt; and that, despite the official and scientific-sounding names, there was no science behind my diagnoses.
A couple years ago I decided to ply my scholarly tendencies to understanding mental illness, hoping that armed with some understanding I may be able to help others, or at least help myself. So, I enrolled in a master’s degree in neuroscience with a psychiatrist as my supervisor, my primary intention being to learn all about the science of mental health, and experience ‘the system’ from the inside.
I haven’t much covered my own symptoms or my own experience, because the story I really want to tell is of how pragmatically clueless are many of the people who actually do the research. Out here in the world, we question (and rightly so) the validity of the DSM. We wonder if it serves us well, and we are highly concerned about the fact that such a powerful and influential document is so flawed.
On the inside of the research machine though, where such conversations should be taking place constantly, we are miserably silent. We treat the DSM as received wisdom, probably more because it would be highly inconvenient to do otherwise than because we actually believe the hype. Yet, the fact remains that the first thing that happens in any clinical study is the handing out of diagnoses (this person is bipolar, that one obsessive-compulsive); we then enrol ‘controls’ who do not have the particular disorder we’re interested in, and that’s the end of the diagnosis question. We treat the DSM categories as real entities like cancer or diabetes, and because we all assume they are real, they become real, everywhere except in the sufferer’s head, the only place it matters.
My point is not to support or dispute the DSM; many wiser minds than mine have done this. My point is that in mental health research, the place where this controversial topic is supremely important, we’re not even talking about it. In fact I often find myself educating others about the most basic elements: did you know that the NIMH is not going to use the DSM for research anymore? Did you know that Allen Frances, the chair of the DSM-IV committee, has been telling everyone who’ll listen all about the ridiculous and awful things that are happening at the American Psychiatric Association? Are you even the slightest bit aware that our ‘bible’ of psychiatric diagnosis is hugely controversial?
These are conversations I might expect to have with teenagers, not with ‘mental health experts’, and sadly it’s not because of my training that I know about these things, rather because of my own personal interest.
It’s particularly alarming to me on a personal level that these people, even more than the average, it seems, are oblivious to the mental health of those around them. Occasionally I go through depressive episodes in which I become markedly more irritable, sleepy, and unfocused. I sleep late, I have much less to say than I usually do, I fidget constantly.
I can’t imagine it’s that hard to pick up the difference when it comes on for a month or two or three, then goes away again, yet none of my coworkers ever noticed, or if they did they didn’t feel the need to fire off a quick, “hey, are you doing okay? Wanna talk?”
So at the same time as I’m having deep conversations about depression and the meaning of life with my roommates, my wife, my friends, and the occasional stranger, not a word is mentioned by or to any of the psychiatrists, psychologists, or other professionals I’m surrounded by every day. People who, technically anyway, should have a lot more to say on the subject. If I had been more ill, if, say, I had ended up committing suicide, I can imagine these people scratching their heads raw and saying things like “no, of course I didn’t see it coming! He seemed so nice…”
There is a very powerful ‘us and them’ mentality within mental health research- it’s the patients who have a problem, not us, never us. This thinking is so problematic, damaging, hypocritical, and just plain wrong I don’t even know where to begin.
For my part, I approach the whole thing by being as open as I possibly can without actually wearing an “I have a mental illness” sash around the office. I have since discovered that others in my office have struggles and diagnoses of their own, but they either haven’t felt comfortable telling anyone, or they haven’t felt safe. I suppose the logic goes, once ‘we’ admit to such problems, we are no better than ‘them’. Personally, I always felt a lot more comfortable hanging out with ‘them’ anyway.
Here’s one interaction that struck me as particularly funny in a depressing kind of way. A few months ago the person in the desk next to mine (soon to be a psychiatry resident), asked me if I wanted to be a control subject in her depression study. I informed her that I’d love to, but I wasn’t eligible: I not only had the disorder in question, but was on the drugs for it too! I watched a panoply of emotions play across her face, eventually settling on something like pity. “I’m so sorry, I had no idea! If it makes you feel any better, I never would have known if you didn’t say something!”
Actually, soon-to-be-a-psychiatrist, that doesn’t make me feel better. I am no master of deception, and if you hope to be even vaguely competent in your profession, you should have known. You should have known, and you shouldn’t have acted like I was stricken with some horrible affliction, deserving of your pity.
So to attempt to summarize, I’ve spent a lot of time in mental health research and here’s what I’ve learned. The scientists don’t know much when it comes to diagnosis or treatment of mental illness, so take everything they say with a grain of salt. In real world terms of what mental illness looks like and how one should approach it, many know even less. Despite all the talk of stigma reduction, I have experienced mental health stigma most strongly among the very people who are talking about stigma reduction, so it’s possible that current approaches aren’t working. And lastly, just because a thing sounds scientific, don’t mean it is.
On the flipside, there are definitely psychiatrists, psychologists, therapists, etc. out there who are very good at what they do, who genuinely care about helping people, and who do a lot of just that. I met a lot of those along the way too, and I have huge respect for them. What they do is a kind of art, it takes heart and a lot of expertise, the stakes are high, and the job is very hard. It’s just not science, that’s all. I no longer assume, solely on the basis of a fancy degree or prestigious job that a person actually knows anything.
What I learned by studying clinical neuroscience and psychiatry was not exactly what I expected- I sure learned a lot more about what we don’t know than what we do know. So I’m going to stick with my friendly kitchen-table therapy among those I love, my drugs that work sometimes even though no one knows why, and my acceptance of the fact that sometimes in life, you just can’t get out of bed and that’s okay.
A Reader