Last night I participated in the first tweetup for the Society of Participatory Medicine. In their words, Participatory Medicine is a cooperative model of health care that encourages and expects active involvement by all connected parties (patients, caregivers, healthcare professionals, etc.) as integral to the full continuum of care. Not surprisingly, this is something with which I firmly agree. I believe in patients as active participants in their own healthcare. I say it all the time - the doctors aren't the ones taking the pills, you are. The issue with pushing for patient "participation" is not everyone is capable of wholly participating in their own healthcare. Sick people are busy being sick. They don't have time to read research papers. While some in the tweetup agreed, two notable exceptions occurred: ""too sick"? -why Patient support groups are key took 4 building the 'plumbing'." "One can't be busy getting well & busy being sick at the same time. The patient has to choose." Sounds like blaming the patient to me.

I get asked quite a bit for specific treatment recommendations. People will tell me a few medication details and then ask what to do, or someone will ask what my experience has been on a certain treatment. My answer is always the same: only your doctor is qualified to talk to you about your treatment as they know your personal history and health. My experience is only one person’s and cannot be generalized to any other person. And that is the right answer. But unfortunately, it’s one people don’t want to give (or get). A clear example is seen on Patients Like Me, a web site designed for patient-to-patient communication.

In the times when I've had prolonged periods of wellness, I don't particularly think about bipolar disorder and I don't feel its implications. I just get up, get out of bed, say 'hi' to my cats, and go about my day. True, the med-taking is a reminder, but bipolar isn't necessarily top-of-mind. This does not mean, however, that I can forget about the bipolar disorder. Forgetting about bipolar disorder is one of the most dangerous things you can do.

I take a lot of flak for what I have to say about mental illness. My positions are often blunt and sometimes unpopular. This is fine with me. I’m an opinionated girl. Not everyone enjoys that particular charm. But one thing that gets said every once in a while is I’m, “playing the victim.” And not only that, but I’m encouraging others to be victims. Contagious victim-ness I suppose. This, of course, is just a slur designed to make me and others feel bad about what we have to say. Well, I say this: Admitting to having a mental illness doesn’t mean you’re “playing the victim.” Talking about mental illness isn’t “playing the victim” either.

When I discovered I was bipolar, I suddenly became scared of everything. Things that never crossed my mind started to shudder through my bones and produce endless waterfalls of tears. I was afraid of diagnosis. I was afraid of what it meant. I was afraid of psychiatrists. I was afraid of treatment. I was afraid of not getting treatment. I was afraid of what the treatment would do to me. Mental illness means being afraid.

I talk to many people who want to help a person with a mental illness. Often the people they want to help are loved ones who have just been diagnosed with a mental illness and those who want to help feel powerless. The “helpers” have a hard job, but let me just say, we love you for it.

Every medical treatment comes with risk. If you have a headache, you could take ibuprofen or you could have a craniotomy looking for brain cancer. One has considerably more risk than the other. (Of course, if you have brain cancer, then the reward could be quite great.) This means every time you undertake a bipolar treatment knowingly, or not, you weigh the risks vs. rewards in your head. And one of your doctor’s main jobs is to manage that risk vs. reward scenario. Doctors, for example, almost never prescribe barbiturates anymore due to the fairly large risk of addiction. Instead, they prescribe benzodiazepines (or nonbenzodiazepines; very similar) which do not carry such an increased risk. In both cases, they carry the reward of managing anxiety. But some people don’t want to take benzodiazepines either, because some people tolerate more risk than others.

I was recently having lunch with a woman who has a series of medical issues, including pain management. One of the medications she is on is oxycodone. She said she would like to get off of the oxycodone but when she has tried, the pain has been unbearable and no other pain medication would touch her pain. So I asked her, "if this medication is working for you and other medications don’t work, then why are you trying to get off of it?" She said it was because of the stigma attached to that medication. So I told her something important – you can’t let stigma make your treatment decisions.

Some people believe that being crazy makes you creative (perhaps brilliant) and being creative makes you crazy. Similarly, along this line of logic is that taking medication makes you uncreative and perhaps, un-brilliant. Well, pish-tosh I say.

I know this seems like an odd question, but I was considering it this morning (in my shower). It is a common problem for people with a mental illness. I have a tendency to avoid showering (really) and I know of others with a mental illness have gone weeks without showering. So, if all we’re talking about is standing in some warm water, why don’t we want to shower?