I have bipolar disorder. It’s a real challenge to live with, because you have to be eternally vigilant about your moods. Am I sad because something went wrong, or am I getting depressed? Am I awake at all hours because of my medications or because I’m manic? Am I thin-skinned and easily hurt because I’m stressed out or is it a mood imbalance? And I’m not the only one who has to watch out – the boyfriend has to, as well. I tend to notice before he says anything, simply because I’ve lived with this for more than half of my life and he’s only dealt with it for 2 1/2 years. Even if I notice something is off first, he makes a great sounding board, because I can ask him, “Do I seem to be more snappy and snarly lately?” or “Am I sleeping more than usual?” He’s around and observant enough that he can venture an opinion on questions like that.
The boyfriend kind of got a crash-course in my disabilities not long after we met. The same month we met, I had a professor do something incredibly hurtful, which sent me into a suicidal depression. The boyfriend and a couple of friends had to babysit me, and other people had to portion my pills out into my weekly pillholder because I didn’t feel safe with the bottles. (he also got a crash-course in some of the physical disabilities – I had invited him back to my place for tea and snuggling one night, and en route from where we’d been to my place, I had such a bad IBS attack that I lost control of my bowels and needed a shower immediately upon getting home. When I explained what had happened, his only worry was that I’d feel too icky to want him to stay) Anyhow, he ended up driving into the city several days a week to just sit with me and make sure I didn’t do anything to harm myself. He also, by virtue of being an interesting and intelligent man, managed to distract me a fair amount when I needed it most.
Now, in addition to the lived experience of mental health being difficult, there’s the issue of medications. I choose to be medicated because the benefits are greater than the costs for me. That’s not true for all people. It’s really bad form to assume that you know better how to treat someone’s illness (mental or otherwise) better than they and their doctors do. For some people, that means medication, and for some, that means other things like lifestyle modification. Unfortunately, the most common two forms of medical prostelytizing with mental illness that I’ve seen are the people who try to tell you whether or not you should be using medications at all. Either mental illness is terribly dangerous and miserable and all people who have one really must be medicated, or people who use medication have been duped by Big Pharma into believing that medications are necessary. I see those two arguments the most from people who don’t have mental illness – talk about ableism! “I don’t have your mental health condition, but look, I know better than you or your doctor how you should treat it!”
We also get told we should be on a different medication. We tend not to like that much – after all, we and our doctors have figured out together what works for us. Why should we change, just because you believe that another pill will suit us better? It doesn’t really matter if it’s from your own experience or from watching other people – we’re more likely to know the best medication for us than you are. The medication you push may have horrible side effects for me, or it may not work well for me. I may be happy enough with my current medication that I don’t want to take the risk of trying other medications. When you’ve gone through enough failed medications, the idea of trying a new one can become…very anxiety-producing.
Which is exactly where I stand now. I’ve put on some 50 lbs in the last 3 years. My bipolar medication, Seroquel, is known for causing weight gain. It’s also the only medication I’m taking that fits that profile that I have potentially viable alternatives for. We also discovered accidentally that it seems to be suppressing my libido. I forgot to schedule with my psych, so I ran out of Seroquel 3 days before I saw him. Immediately, I was wanting to jump the boyfriend’s bones. I’d thought that my lack of desire was because of some physical stuff going on, but I sure found out otherwise! I also noticed, in the last few months, a lot of feeling…flat. It’s kind of like having your emotions switch from color to black and white. There’s just less range. It feels kind of numb. I think it’s because we added Cymbalta a few months ago. Cymbalta is a psychoactive drug that also affects chronic pain, which is why we added it. And for better or for worse, the Cymbalta makes enough difference to my daily pain levels that I don’t want to remove it if I can avoid it. I may end up not having a choice.
So now I’m going to be slowly adding a new medication, Lamictal. Lamictal has a relatively low incidence of side effects, but one of the potential side effects is very, very dangerous. Lamictal can trigger a condition called Stevens-Johnson Syndrome, which can cause your skin to just…die. So they start you on a very low dose and you watch very carefully for rashes and blistering in the mouth. I was started on Lamictal once before, but I get little stress blisters in my mouth, so that psych (wanting to be cautious) stopped the medication and tried me on other things. Other things that turned out to be positively horrible, one of which caused the worst depression of my life. But that’s neither here nor there.
Starting a new mental health drug is really, really scary because you don’t know what will happen. Will it work? Will it make the depression worse? The mania? Will it deaden my emotions and leave me feeling numb? Will it affect my ability to think? Will it kill off my libido? Will it make me feel like the world is at a distance from me? Will it have physical side effects, like headaches and nausea? And of course, some mental health drugs have truely scary side effects, like Stevens-Johnson Syndrome and potentially permanent tics or spasticity.
Knowing the risks, you have to wonder a little sometimes if the mental illness is really so bad that it’s worth it. It’s a decision each person has to make for his or her self. For me…for me, untreated, I don’t do so well. I have periods of such severe depression I can’t get out of bed, and I have periods of mania so bad that I can barely resist the urge to just spin the wheel of my car and see what happens. My bipolar is something that I can’t manage without medication to rely on. I know for other people, medication isn’t a good choice, but for me, for my body and my mental illness, living without it is the greater evil.