Some thoughts about mental illness

Tuesday was World Mental Health Day. I was traveling at the time, so I didn’t have enough time to do more than a quick Facebook post, but I’d like to say a little more today.

I have bipolar disorder. I’m lucky enough to live in a context that allows me to be “out” about having a mental illness. I also believe that the only way to eliminate prejudice against people with mental illness is for those of us who can afford to be “out” to speak up, to make ourselves visible. Only by stepping forward and sharing our experience can we put a human face on mental illness and end the stigma. We need to convince people that we’re not violent crazies or lazy bums – we’re your next door neighbor, your friend who hasn’t felt safe enough to tell anyone, your coworker, your cousin, child, spouse.

So in that spirit, I’d like to talk a little bit about my own experience, and why I feel lucky (in some ways) to have bipolar disorder rather than another mental illness

A little medical background:

Some mental illnesses are caused by psychological trauma, and some are biologically driven. Both are serious, and both can be lethal. But you treat them in different ways. Illnesses caused by psychological trauma can frequently (not always) be cured by talking with a therapist over a period of time. Psychiatric medications can stabilize your mood in the interim.

Biologically driven mental illnesses are the result of a fundamental imbalance in brain chemistry. Therapy can (to some degree) help you manage the symptoms, but won’t cure the underlying disorder. To manage a biologically driven mental illness, you need to take medications to get your brain chemistry back in whack, and keep it that way.

Bipolar disorder is one of the biologically driven mental illnesses, and it is incurable, though it can (sometimes) be managed through psychiatric drugs. Because I have bipolar disorder, I’ll always be at risk for mania and depression unless I take medication for the rest of my life. I’m lucky in having found a set of medications that works, with relatively few side effects. Many people aren’t so lucky.

Some of the biologically driven mental illnesses are genetic. Bipolar disorder is one of them. In fact, a recent NIH study reported that “the [three largest recent twin studies] estimate the heritability (proportion of disorder risk in the population attributable to genetic variation) of BPD to be 79 ““ 93%, substantially higher than even medical disorders such as breast cancer for which specific susceptibility genes have been identified.”

In fact, bipolar disorder is one of the most heritable of all medical disorders – which means that it is indisputably genetically driven. It also means that if you have bipolar disorder, your children are much more likely to have it, too. (One of the reasons I chose not to have children is that there’s a 15-25% chance that any child I bear would have bipolar disorder. I wouldn’t inflict that on my worst enemy, let alone a beloved child.)

Now, some people with bipolar disorder have relatively stable moods most of the time. When their moods shift, they’ll be “up” or “down” for weeks or months at a time, and they can go for years without any episodes at all. I, however, have Type II ultra-rapid-cycling bipolar disorder, and mine manifests more or less continuously if I’m not on medication. I’ll swing from hypomanic (lots of energy, act impulsively, start lots of projects, etc.) to anxious/depressed on a cycle of a few days or weeks – sometimes even within the same day. Sometimes the mood swings are relatively mild, and I can manage them easily; under stress, they become worse. If I don’t manage them carefully, they can spiral out of control, become incredibly painful, and potentially kill me. This has happened on at least three separate occasions, and is terrifying. After the last severe bout, which lasted for six months (it’s frankly miraculous that I survived), I decided that I would rather die than go through that again. It was at least a decade before I felt I might change my mind about that, and I suspect that’s mostly because I’ve forgotten how painful it was.

Managing mood swings without medication means being constantly alert to my moods, and constantly checking whether my perceptions are “normal” or not. The insidious thing about mood swings – well, mine anyway – is that manic or depressive thoughts always seem perfectly reasonable at the time. So – without meds – every time I feel good or bad I have to stop and say, “Wait, am I feeling better or worse than a normal person would in this situation?” My mood can shift from perfectly fine in the morning to feeling completely depressed, stressed, and overwhelmed in the evening. The mood shift can last hours, days, or months.

I can control the mood shifts to some degree. That is, if I’m thinking, “I’m such a loser, there’s no way I can do this, life is terrible,” I can catch myself and say, “Stop, you’re depressed. Your thinking is out of whack. Let go of the stressful emotions. Go meditate or exercise and you will feel better.” And then I go off and do that, and my mood generally improves (or at least doesn’t get worse). I have an entire checklist I run through whenever I’m feeling particularly good or bad – a set of symptoms/thoughts/behaviors that indicate I’m in the grip of a mood swing. I also have another checklist of things I can do to alleviate a mood swing. This works most of the time, but it takes a lot of time and attention, so it’s a constant drain on my time and energy. Unfortunately, the mood swings get a lot worse when I’m stressed out – which is generally also when I have the fewest resources to deal with them. The net result is that stress can easily kill me. (I put a LOT of work into controlling my stress level.)

The good news is that I’ve found medications that work very effectively. Lots of people with bipolar disorder aren’t so lucky, and some choose to stop taking their meds because they miss the glorious highs of manic episodes or feel emotionally “flattened” by the medications. Because I have Type II bipolar disorder, which manifests as cycles of depression and hypomania (mildly manic but not dysfunctional), I’ve never had a full-blown manic episode – for which I am truly grateful, because it means I don’t have any highs to miss. And my medications stabilize me on the functional side of hypomanic, so I have a lot more energy than most people, but not to the point of being dysfunctional. It’s a good place to be, and I’m very fortunate.

So I have a biologically driven, genetic, incurable mental illness that is (thankfully) well-managed with medication. I think this makes me pretty lucky for someone who has a mental illness. (And even more so since I have insurance that pays for my meds.)

Here are four reasons that I feel I’m lucky.

My medications work. Because every person’s body and brain chemistry is different, there’s no guarantee that a particular medication (or combination of medications) will work. Many of the people I know with mental illness have medications that help, but which don’t control the problems completely, or have debilitating side effects. Mine work, with relatively few side effects, which makes me very lucky. (And very grateful.)

I am confident that my mental illness is a serious issue. Because mental illness is invisible, and is stigmatized/poorly understood by our society, many people with mental illnesses regard their problems (subconsciously or consciously) as “not serious,” even if the illness is debilitating. This is especially true for people with lifelong mental illness, or who have lived with a mental illness for a long time, because they have no yardstick for “normal”. They tend to think of their illness as “not that serious” because the symptoms – even if severe – are just part of normal life for them, and they’re getting by, if poorly. (I was in my early thirties before it occurred to me to ask a friend whether she also had visions of being tortured or killed every few hours. Her shocked response startled me. I had never realized that this was abnormal, because I’d had them all my life.)

So, up to the point of hospitalization, I regarded my problems with depression as “not that bad” and wondered why I somehow wasn’t coping with life as well as everyone else. As I’ve said many times since then, one of the “advantages” of almost getting killed by a mental illness is that the locked ward of a mental hospital, on 72-hour hold because your psychiatrist and therapist both think you’re about to commit suicide, is a great place from which to survey your life and think, “Hmm, maybe I actually do have a problem.”

At that time I thought I had depression, and that it could be cured. After I got out of the hospital and rebuilt my life, I was still living with mood swings, but again, I thought they were normal and it was just a matter of managing them – which other people were apparently doing a lot better than I was. It wasn’t until bipolar depression almost killed me a second time that I got clear that my mental illness was real, and that it was something to be taken very, very seriously. This makes me lucky among people living with mental illness, because it’s very hard to believe that your illness is serious when it’s (a) invisible to everyone except you, (b) feels normal, and (c) uninformed or uncaring people are happy to tell you that your problems are imaginary.

I know that my mental illness is a medical and not a moral issue. Most people with mental illness have been told at one point or another that they should stop being lazy, stop being oversensitive, or that the trauma is over and they should get over it. (Etc.) And because they’ve been told that so often by others, it’s very likely they’re telling that to themselves. When I thought I ‘just” had depression and that therapy would cure it, I wondered if I was weak or lazy because my childhood experiences were causing me so many problems. Having an illness that is unmistakably biologically driven makes it very clear that it has nothing to do with my morals, work ethic, or strength of character. It’s something I was born with, and is the result of a chemical imbalance in my brain. For those with more ambiguous mental illnesses, it’s much harder to recognize that it is an illness, not some form of moral problem or weakness of character. (Especially when there are so many people who will tell you that it is a problem with your character.)

I don’t feel that I have an obligation to cure myself. This is really difficult, especially for people with a lifelong illness. Many people (both “normal” and people with mental disorders) feel that mental illness is something temporary, that you can “tough it out” or “get over it.” If you’re a normal person going through an unhappy situation, this may work (though I think it’s a pretty inhumane way to treat yourself). But if you have a mental illness, it can be devastating or even fatal. Telling someone with severe depression to “tough it out” makes exactly as much medical sense as telling someone with a broken leg to cure it by running a couple miles on it. Unfortunately, people with mental illnesses get told that all the time, and the results can be fatal. And because people think of mental illness as temporary, people who have recurrent mental disorders are frequently labeled as “lazy” or “making excuses”.

So the “nice” thing about having a disorder that is scientifically demonstrated to be genetic, incurable, and biologically driven is that I don’t feel the need to “cure myself” or “get over it”. I’ll be living with this for the rest of my life, and if you think it’s my obligation to get better, I’ll deck you without hesitation or apology. Many people with mental illnesses, particularly incurable ones, have a really hard time believing this, even though it’s true, because they’ve gotten so many messages to the contrary.

Living with mental illness can be excruciatingly difficult – both because it is intrinsically challenging, but also because it is physically invisible, and thus easy to deny or minimize. This means that if you have a mental illness, you don’t just have to grapple with your medical problems. You also have to fight to get other people (and yourself) to understand that the problem is medical, that it’s something that needs to be taken seriously and treated, and that you may never be “cured”. This makes the struggle with mental illness ten times harder.

Because my mental illness – bipolar disorder – is both life-threatening and incurable, it is easier for me to recognize and articulate some of these issues. That, I think, makes me lucky, among people who have mental illness.