I’ve had a number of interesting conversations since my last blog post, which has given me more insight into why mental illness is so misunderstood, both by people who have it and people who don’t. Here’s why:

Your normal isn’t my normal. In fact, it’s probably very different.

This is actually true for everyone, because everyone’s life experiences vary. People who live in different communities and cultures, or under different circumstances, will have very different ideas of what constitutes “normal” life.

People tend to assume that what is normal for them is normal for everyone else. This works pretty well when you are surrounded with people with similar life experiences, i.e. most of the time for most people. But it’s literally a killer for people with mental illness.

Here’s why.

I grew up with bipolar disorder. I was probably asymptomatic as a little kid, but like other people, I don’t remember much from my childhood. It was definitely present from the time I was twelve or thirteen, so I have had bipolar mood cycles as far back as I can remember. Aside from the decade or so that I’ve been on medication, I’ve spent my entire life cycling up and down. Those mood cycles are “normal” for me. It’s what my body and brain do if allowed to interact naturally with the world.

It took me thirty-four years to realize that other people experience the world differently. Very differently. Everyone assumes that their reality is normal. And since you can’t see inside other people’s heads, there’s no way to know what their reality is like. You have to go on behavior. What do they say? What do they do? Are there any differences between what they do and what I do?

And because mental illness is invisible, I simply didn’t realize that there were differences between me and other people. Yes, I got anxious and depressed frequently. But so did my friends. Teenage angst and depression are nothing new; my parents either didn’t notice, or figured it was a phase everyone went through. (They had other problems to deal with at the time, so it would have been fairly easy for it to go unnoticed.) I figured I was basically like everyone else – especially since I managed a straight A average and was the captain of a state champion math team. So clearly, whatever it was, it wasn’t serious, nor was it atypical.

In college, I didn’t notice it either. I went to a pressure-cooker college. We were all stressed. Feeling depressed and anxious wasn’t anything abnormal among my friends – half of whom were on medication for mental illness – so again, I assumed that was just a normal part of college life. And I was doing fine in my classes. I had no reason to think that other people experienced the world differently.

Even when I was hospitalized at the end of my first year of graduate school, I didn’t realize that other people’s thought processes were different than mine. Everyone thought I had depression – well, normal people get depressed when they’re in a stressful environment. You go to therapy, you get over your childhood traumas, you get better. I went to therapy, things got better, and I figured I was cured.

The thing was, my experience was never normal. But I had no way of knowing that, because it didn’t even occur to me to question it. I had “up” periods, where I would have a lot of energy, get lots done, and be really happy. Awesome! People thought I was super-productive! I was an amazing person! But I also had “down” periods, where I got really stressed out and had trouble functioning. I thought that was because of my environment, because people get anxious when they’re in a stressful environment. I did my best to fix that. And I learned ways to manage my mood swings.

What I didn’t understand is that normal people don’t have those mood swings. I always assumed that other people reacted to the world the same way I did: some periods of high productivity followed by some periods of low productivity. To all appearances, I looked normal, except for being freakishly productive sometimes and less productive other times. That’s not unusual. And I was really good at dragging myself out of bed on days when I was freaking out, because everyone else shows up to work on time, and if they can drag themselves into work on their “down” days, you should too. Or you’re being lazy.

And that’s the root of society’s problem with mental illness. I assumed that other people were undergoing the same mood swings that I was. I had no conception that this might be abnormal, because it was normal. For me. Why would you question something that’s completely normal? Do you notice that you breathe? I didn’t. What I did notice was that other people were coping with their mood swings a lot better than I was. I wondered, more than once, why I just couldn’t seem to get my act together.

The problem cuts both ways. Someone who has never had depression doesn’t have any concept of what it’s like living with depression. To them, “feeling depressed” is what happens when they aren’t quite feeling up to snuff themselves. Well, everyone has their down days, but you can’t just let that stop you. You get out of bed anyway, you take a shower and eat breakfast, and a few hours later you’re no longer feeling depressed. If you stayed in bed, you’d have wasted an entire day! The solution to depression isn’t to give in to it, but to get yourself going.

That works for normal people, because their depressions are temporary – a couple hours or days – and generally not as severe as the person who can’t get out of bed. Let me give you an idea of what the depressed person may be going through.

I’ve been tweaking my medications for the last few months, because one of the meds I was on for over a decade has a weight gain side effect that has resulted in my putting on 40 pounds in the last ten years. Long-term, that becomes a serious health issue, so my psychiatrist and I decided to see if we could find one that controlled the bipolar disorder without predisposing me to gain weight. So we’ve been experimenting with different medications. It turned out that the last one didn’t control the bipolar disorder, so a few days ago I actually had a day of relatively mild bipolar depression, the first one in over a decade. This is what it was like.

I woke up in the morning feeling both emotionally and physically exhausted. That’s how I feel when I’m coming down with a cold, so I went back to sleep. When I woke up again, I was feeling a bit better physically, but still feeling emotionally drained, and a bit anxious. Low blood sugar and/or dehydration can do that to me, so I drank a quart of water, and ate a piece of fruit. No change. I thought about calling my psychiatrist, but figured I’d try a workout first. So I did about half an hour of intense exercise, which helped, but an hour later the anxious, depressed feeling came back. I still wasn’t sure if it was something physically wrong or a bipolar episode, so I figured I’d wait an hour and see how it went.

I sat down at the loom and started threading my next warp. Here’s what was going through my head. The flow of my usual thoughts is in normal text; the thoughts of my “watcher” (the part of me that constantly monitors my mood and interrupts if it sees something abnormal) are in italics.

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Wow, I hope this isn’t a bipolar episode. I’ve been through four new meds in the last three months, but they’ve all had bad side effects, and this latest combination may not even be working. I’m starting to run out of new medications to try.

Well, I can always go back on the Abilify, I guess. But if I do that, I’ll keep gaining weight, and then I’ll have all the physical problems associated with weight gain. I might wind up with Type II diabetes, and that might kill me too.

On the other hand, Type II diabetes isn’t nearly as bad as bipolar disorder, and if it kills me, that’s how it goes. I’ve already had twenty-six years longer than I would have had without medication. I’ve had a good run, I’ve had a lot of bonus time. It’s not so bad.

Wait. Why are you suddenly being so morbid?

Well, because I’m in a bad spot. If these meds aren’t working, then I’m doomed.

Stop. This isn’t normal. This is bipolar depression, and you need to call your psychiatrist..

(Gets up, calls psychiatrist, leaves a message.)

Okay, now where were we?

You were obsessing over morbid stuff and getting yourself more depressed. Stop doing that. Think about something positive.

OK, fine. I’m working on this scarf, let’s focus on that for awhile.

(A few minutes go by.)

Gee, I hope I can finish these scarves in time. It was really stupid of me to have lost the ones I wove earlier. Now I have to spend this week re-weaving the scarves so I can get them to Handwoven before the article deadline. That’s an entire week lost that I could have been working on the business! Now I won’t be able to get the class out in January, as I had planned. In fact, if this bipolar medication adjustment thing keeps going, I’ll never be able to get anywhere on the business. Then I’ll run out of money and have to depend on Mike, and that will totally ruin our relationship.

Stop. You’re obsessing about negative stuff again. This is depression, not reality. I’m certain of that, because you weren’t thinking like this all day yesterday – you were being much more positive and feeling much less bleak about the future. This is not reality. Let go of those thoughts, and realize that this is going to pass. You just need to get through today, and tomorrow you’ll try something else and it will probably work. If it doesn’t, you can always go back on the Abilify; you know that works. It’ll be okay.

Okay, whatever you say. But I’m still worried about this whole bipolar thing. I mean, I know Mike gets stressed when I’m not feeling well. I worry that all this experimenting with medications is going to cause him a lot of stress and make him get anxious himself. I don’t want to cause him any problems, especially if things get worse and I start getting suicidal, like last time. I don’t know how he’s going to handle it.

WILL YOU FUCKING STOP?!?!?

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Of course, I didn’t stop. That’s one of the problems with depression: it doesn’t stop just because you tell it to, or because you know it isn’t “real”. In fact, this went on all day. I would start thinking negative thoughts and spiral down into obsessively morbid thinking; I’d catch myself a few seconds or minutes later, and stop that train of thought. Two or three minutes later, it would happen again. All. Day. Long.

Fortunately, I know various ways to cope with this, since I lived with it for most of my life. Exercise helps, if only temporarily. Talking to other people can reset my mood briefly. Doing something that occupies my brain will help keep it from happening – I can’t have negative mental dialogue if I’m so absorbed in what I’m doing that I don’t have mental dialogue at all. I also knew this was temporary, because I knew I had an effective medication combination to fall back on. If I hadn’t known that, I would have been terrified. One day isn’t bad, it’s like having a serious headache all day – painful, but livable. But when it goes on for months, that’s incredibly painful. It can drive you to suicide. (Trust me.)

My basic problem with bipolar depression is that it is constantly trying to change my concept of “normal” to something negative, painful, and hopeless. I’ve had enough cognitive behavioral therapy that I can identify that the shift is happening, and get myself out of the downward spiral of thoughts, but it’s like chasing a hyperactive, obsessive two year old, because twenty seconds later, it starts happening again. It’s like living with an abuser who is trying to gaslight you into thinking that your previous perception of reality was totally wrong. But you can’t walk away from this abuser, because it’s your own brain. You live together; you’re always going to live together. So there’s no way you can stop this from happening; the best you can do is grit your teeth, keep reminding yourself that this is not reality – that there is a better and more valid reality out there – and just keep hanging on.

This particular day was actually pretty mild. I didn’t get a lot done, but I was more or less OK. There are other things that happen when I’m having a more serious episode. For example, I start having random moments when I think of something I did wrong. Not so bad in itself, but these flashes of memory are invariably accompanied by a vision of being tortured – my arm with its skin flayed off, a knife stuck into my back, and so on. I’m not stupid, and I’m not psychotic: I know perfectly well that those visions aren’t real. But they’re also unpleasant to deal with, for obvious reasons, and they happen more and more frequently as the episodes get more serious. When they’re really bad, they happen several times an hour, sometimes even more often. Knowing that it isn’t real, that it’s just your brain biochemistry trying to kill you, isn’t that helpful when it’s happening a hundred times a day.

My point in all this isn’t that my life is woeful and you should feel sorry for me. My point is that the mentally ill person who is lying in bed, unable to get up that day, is probably having a very different experience than the “normal” person who had a bad day yesterday and is feeling kinda down, and wouldn’t it be nice of they didn’t have to get out of bed? But the difference isn’t visible, either to the mentally ill person or the normal person. So the mentally ill person thinks that there’s something wrong with them because they somehow aren’t coping with the insanity as well as other people do. And the normal person thinks that the mentally ill person just doesn’t have the willpower to get up and deal with it, and if they did, everything would be fine.

I am fortunate enough to be able to see both sides. Having lived with mental illness for a long, long time, I have an intimate understanding of what it’s like to live in a brain that is trying to kill you. But I’ve also been living a pretty bipolar-free life, on medication, for the last ten years. After a decade, I’m finding that my experience is pretty “normal” – or at least fairly pain-free. (I actually have no more idea of what is actually “normal” than you or anyone else does, since I can’t see into anyone’s head but mine, but at least I’m no longer having mood swings.) If I had lived my whole life in “normal” mode, I’d have absolutely no clue what living with mental illness is like. And for the thirty-four years I was living in “mental illness” mode, I really didn’t understand that “normal” people experience the world totally differently.

So that’s why I think people misunderstand mental illness. Everyone thinks that their perspective is normal. But your “normal” isn’t my normal, and if you don’t recognize that, your assumptions about mental illness can lead to terrible things.

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P.S. The latest medication works just fine, so it was just that one day. What a relief!

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.