Tuesday, December 30, 2014

A Mental Illness Memoir in the Making

Lately, I've been working on a book project, a mental illness tome, tentatively titled South of Normal: Schizophrenia, Manic Depression, and Matrimony (a Memoir). It started as a kind of note-taking or journaling exercise, and for the longest time, I didn't seriously consider that it would turn into a full-blown book. But after passing the 78,000-word mark, with more yet to write, I couldn't very well deny that I was, indeed, engaged in "writing a book."

The book is about mental illness and what a terrible struggle it is to get help. The quality of available help is, overall, rather poor. You can get it, but not in the straightforward fashion everyone thinks.

My wife is on disabiliy; she was diagnosed schizoaffective 15 years ago. (She also has PTSD symptoms, which as many as 40% of schizophrenia patients do.) Schizoffective means you have schizophrenia plus bipolar (mania and depression). Like many schizophrenia patients, my wife also has irritable-bowel symptoms, but that's the least of her issues, at this point.

I struggled with bipolar disorder for many years, before "recovering" from that condition (largely as a result of giving up alcohol) only to lapse into dysthymia, which is a chronic form of unipolar depression that (unlike major depression, which is generally episodic) persists, like an unwanted host guest, for years. Emotional flatness, dour disposition, and anhedonia (inability to feel pleasure) are hallmark symptoms.

Meds for schizophrenia (my wife's condition) often are quite effective for treating the "positive symptoms" of that condition: hallucinations, delusions, bizarre mentation. They're somewhat effective at treating paranoia. They're less effective (or even ineffective) in treating the so-called "negative sypmtoms" of the condition: avolition, anhedonia, flat affect, social withdrawal, inability to attend to hygiene. (In mental illness, positive symptoms are things you have that you don't want: anxiety, for example, or rage. Negative symptoms are things you don't have that you wish you did, like a zest for life.)

Depression is even harder to treat (arguably) than schizophrenia. The meds, by and large, are no more effective than placebo; they help only about a third of people who try them; and relapse rates are high (higher with drugs than without them). In some people, these drugs bring out suicidal thoughts (read the black label warnings and for God's sake don't be so blind as to believe the warnings only apply to adolescents). Adverse Drug Events (ADEs) involving psychiatric medications result in 90,000 emergency room visits per year in the United States. Over 25,000 visits involve antidepressants. Robin Williams was taking Remeron (an antidepressant) and Seroquel (an antipsychotic) before he killed himself, and in fact he had just started Seroquel seven days before.

The risk-benefit characteristics of antidepressants have been grossly misrepresented by drug companies (and the mental health professionals who prescribe and recommend these medications); patients have been misled, or at the very least, not kept properly informed. That's one reason I wanted to do the book I'm working on, and it's why the book (about 80% finished, at this point) has 175 footnotes, almost all of them giving references to the scientific literature, so that readers of the book can do, for themselves, the kind of background research on these matters that family doctors (who prescribe most of the antidepressants now in use in the U.S.), nurse practitioners, and others either can't or won't do.

Mental illness is not a simple matter. Getting help for it is not a simple matter. Everyone would like to think it's a matter of just seeing the right "providers" and getting the right drugs, but the reality of the situation is more nuanced. Relief doesn't get delivered to you in a cardboard box from Amazon. You don't push a button and get relief. You don't take a pill and magically get relief. (Unless you're among the lucky few.) Things are considerably messier than that.You have to fight to find a competent therapist; you have to struggle to find "the right medication" (if indeed you ever do find it). You have to fight to get better, because in the end, as Nathaniel Branden so aptly said, "No one is coming."

I'll have more to say on some of the things I've learned while researching my book, in future posts, right here, so please come back often. In the meantime, thanks for visiting, and if you have specific concerns or questions, write to me at kas.e.thomas@gmail.com. Thanks and have a happy holiday. See you on Twitter!