Friday, August 29, 2008

Quiet reflection at the core

Every day, I wake up and ask myself, "Can I still do this? Is today the day? Is it worth the effort? Is it worth the effort to fake it at least?" Every day, without exception.

A few years ago, I promised myself I would not force myself to live if I could not see a reasonable return on the investment. Every morning, upon opening my eyes, I need to take stock and evaluate my situation. There are always pros and cons, and how the list is weighted to one side or the other changes almost daily.

For me, having bipolar disorder is very difficult. The symptoms themselves are distressing, but there's more to it than that. The constant, chronic side-effects of medication frustrate and disgust me. Just having to take medication is a constant reminder that there is something terribly wrong with me and it cannot be fixed. I would prefer to have a surgery or a cure. Perhaps "prefer" is not the right word. I want these things to be reality so I can live a normal life. A normal life. More on that in a moment.

The argument can be made that there are millions of people who take daily medication, but here's the part that grinds into my spirit: When you have a chronic illness, you have it alone. When you have a brain-based illness, you can't even tell anyone, so there is this incredible isolation that, for me, is incredibly painful.

I am expected to take medication not so much for my own benefit, but so I can be socially appropriate and not be a bother or source of discomfort for other people. I have yet to meet someone whose interest in the treatment of a patient like me had more to do with getting us to feel better nearly as much as they just wanted the odd and sometimes offensive behavior to go away. I believe intervention is always about behavior and judgment and has little to do with concern for the sick person's health. I have yet to meet someone "normal" who has proven me wrong.

From this observation and belief, I have come to feel a tremendous, pervasive pain inside of myself. What makes me feel so burdened is this truth about suffering alone. I have an illness I cannot tell anyone about. It is a secret, something that must be hidden and kept to myself. There is the reality that nobody really wants to know, but there is also the paradox that those who might want to know what affects me so profoundly will be the very same people who will judge me for it. How can a patient be judged for being ill? Are people judged for their asthma, lupus, or epilepsy?

I cannot let anyone know the truth about me. They might overhear me say that I pay $300 per month for medications. They might see that I am prone to dark moods. Nobody notices the really good moods because, culturally, everyone likes those and so they can't possibly be seen as a problem. When I was first diagnosed, both my doctor and therapist cautioned me to be very, very selective in whom I told about my illness. They both acknowledged that this was a shitty way to have to go through life, but we do not live in a culture that is forgiving of or welcoming to people with this particular illness. The stigma is real, and it is prevalent--even within the medical community.

My secret is an actual physical heaviness I feel inside. It feels worse some days than others. On the worst days, I find it hard to breathe because the heaviness is too consuming, sucking all of the oxygen out of my body. This is a lot to carry. I can't tell anyone why I'm weepy today or why I may not have slept in a week or why I can't stop talking--and a mile a minute, at that. I live in a state of near constant sadness. It's not depression, it is loneliness. How can I be expected to live an integrated and productive life without ever being able to just be who I am? I am constantly vigilant in my self-monitoring so as not to reveal a symptom or tell-tale behavior. I am exhausted from the effort.

This secret, this loneliness, this knowledge that judgment is always lurking if given the opportunity, this is what drags me to the place where not living is far more appealing than living yet another day of a tightly compartmentalized life. To admit what is wrong with me is to invite skepticism and scorn. Bipolar disorder is the stuff of tabloid rumors and social mockery. Revealing the illness immediately invites a near total loss of credibility, one that, no matter how hard one works to prove his or her lack of a disability, will still be thrown into that's person's face at the first slip up. It doesn't matter why we make mistakes, get angry, have moods, or achieve amazing success. Either way, the mention of Bipolar disorder will surface as a disclaimer or accusation, depending on the situation. I find this to be a particularly cruel reality. and it is a reality.

I need to work. I need to function. I need to remain integrated into the greater world. I am sick. I cannot tell and still have the life I know. This is the Gordian knot that binds me into loneliness and sorrow. I am trapped with this illness that has no cure, only a deeply entrenched stigma.

I have nobody to talk to. I can blog, journal, ruminate, go to therapy or support groups, and read the words of others who are similarly afflicted, but at the end of the day, I am still alone, still living with a secret, still unable to have close friends, still living in fear of being ostracized, marginalized, and even more isolated.

This is a hard life to live day after day. I am increasingly less sure it's worth it.