Unmedicated is (not) My Decision

Recently I was engaged in quite a discussion on someone else's blog where they discussed someone doing something bizarre and said this showed they were an unmedicated bipolar. There was a discussion of how irresponsible bipolar patients are not to take meds.

I left a comment about WHY people with bipolar don't take meds sometimes. People tend to assume it is because because we want to be manic. Somehow the general idea is that mania feels good. This is what I thought too before I actually was manic. The truth is that mania can result in an elevated mood that sort of feels good (I have never really liked it for more than a day or 2, I find it frustrating and become angry with myself because I know I act strangely when manic), or dysphoric mania, which is what I typically have and which feels horrible. It is agitation and insomnia and thinking too fast to keep up with. Mania is forcing yourself to think about every decision. It is absolutely not fun. (It is true that other people do enjoy mania more than I, but few feel it is the ultimate best state. I think most who prefer it just prefer mania to depression. I actually would rather be depressed as at least then I get to sleep.)

Anyway, the truth is that it is very, very hard to take bipolar meds. Some are somewhat milder than others, but they don't work as well and if the symptoms are severe then the heavier duty meds are needed. Side effects are things like severe weight gain (for me about 70 lbs); destruction of the thyroid; kidney damage; liver damage (all of those are real enough threats to require frequent blood tests); hair loss; constant, severe thirst; infertility; serious sedation; over-control of the emotions so that it's hard to not feel bland (I choose this over poor control, but it means that I almost never cry, no matter what happens); significant hand tremors; incontinence; visual changes; and many, many more. I've been to the emergency room twice in 4 years with reactions to new meds.

I have a decent selection of those options as well as others. I continue to take my medications though because I know perfectly well what happens without.

I struggle to take them though. Not only do I deal with side effects, but I have a great deal of difficulty swallowing the pills and then keeping them down. I have forced down 15 pills or more and then thrown them back up--often up to $10 worth of medication--so many times I can't count. I have tried everything, but my stomach just doesn't like my meds. There was a long period of time where I threw up every morning. Every morning I arranged to be between patients at 10:30 because I could be certain to be kneeling in the bathroom gagging and hoping nobody had peed on the floor recently. For at least a year it took me 30-60 minutes/day to take my pills, struggling to swallow each one. Then I spent the next few hours struggling to keep them down.

During that time, the dark days of this illness, I had about a month I refused to take meds. I took some, but not nearly enough. But then I learned that I am incapable of lying about whether I'm taking them, and that my psychiatrist can tell. I think she smells guilt. Finally I realized I had to prove to her that I truly couldn't tolerate the meds I was on, which I did by taking them and throwing them up, over and over until she saw I truly couldn't handle it.

The meds are also incredibly expensive. In 2005 $5920 worth of pills went down my throat. I paid about $700 out of pocket. This is on top of paying for about $2500 of counseling and $600 of psychiatric visits. Not to mention various other medical expenses, most of them related to treatment of hypertension caused by medications. I am fortunate enough to have good insurance, a good job, and I can afford these things, although it means no luxuries, ever. Not everyone is so blessed.

These circumstances combine to make taking bipolar meds very, very difficult. I resent every pill I swallow, knowing it's going to make me fat, thirsty, tired, and nauseous. I have cried many times after throwing up $10 of medication and knowing I did not benefit from the effort of taking it. Along with that, it is very hard to have your life feel blunted. People always think bipolars quit taking meds because they want to feel highs. Well, as a bipolar who knows that she won't feel high if she doesn't take her meds, I can say that I don't want to take mine either. Sometimes crying or laughing without effort feel really good. Sometimes it feels good to have an appropriate emotional response to something, and while my responses are better on meds than off, on is not "normal" either. I remember normal. I miss it, and partly it's the meds doing this.

Many people seem to think it is the bipolar's responsibility to the rest of the world to take these meds. Or they think unmedicated bipolars clearly aren't making informed decisions. The truth is that I can understand fully how someone could choose to be unmedicated. For someone with less severity than I have, I can even see being envious. Some bipolar patients don't have symptoms a great deal of the time. I can't imagine how hard it would be to take meds if that were true.

Having taken most of the meds in some combination or another over the last few years I can say that I believe bipolar patients who are legally competent should have the right to try to live without meds. I think the decision should be made with a doctor's awareness and support when the person has been stable for a significant time period, and a support system should be in place to help resume meds quickly if a need arises, but if there is a good support system watching for problems, I believe it is fair to attempt life unmedicated.