Complications...

Today’s discussion in class, as well as Andrew Sullivan’s piece, elicited an interesting response in me, personally. When thinking and talking about disease, there are a lot of misconceptions about a lot of things. First of all, I know that you cannot understand a disease unless you have it. There are so many different components that go into living with a chronic disease that, unless you are personally experiencing all of them, you just don’t get it. The emotional responses to both those living with disease and those around people living with disease are diverse and unpredictable. From my experience, outsiders think they understand disease. Even doctors think they understand disease, but they do not. AIDS is interesting because its effects were widespread, amplified, and misrepresented. An added component was that it did, and still does to some extent, signal death.

While it is impossible to understand a disease unless you are living with it, I believe that there are some common experiences among people living with long term illnesses. I think the closeness I feel to the disease is twofold. First, I feel closeness because I am such a part of the gay community and, while it is now a generation removed, I still feel the effects of it being a part of that community. Secondly, I am living with a long term illness.

I have a rare genetic disorder called CRMO (chronic recurrent multifocal osteomylitis). This disease is diagnosed to about one person every year in the United State, most of them children. Symptoms include multifocal bone pain, skin lesions, fatigue, bone disfigurement, muscle degradation, and a compromised immune system.

When I was first diagnosed, the disease was ruling my life. I couldn’t walk at all, I was sick all of the time, and I was in constant pain. The doctors told me that I was going to die, which is another reason I can relate to the AIDS crisis. Know that you are going to die and then not actually keeling over is an odd feeling. One would expect celebration but, as Sullivan noted, there is an odd feeling of relief, but no excitement.

My disease is now controlled. I no longer have constant pain, but at the expense of a lot of different discomforts. The medicines that I take are harsh on my body and are no fun to take. Reflecting on my life before and after I started taking my medication however, shows me how much I am thankful for these drugs. While I do not live a normal life, which is a truth with anyone living with a chronic disease, I live a seemingly normal life, which quells the questions, stares, and general discomfort I felt when I “looked” sick. That, alone, is worth it. I can compare this to the AIDS cocktail. It can’t be fun to take, but for people who respond to the drug, it is better than not taking it.

Disease is an emotional thing which is elicited by Sullivan. It is something that I all too well understand. Like I noted in class, community is an important thing when it comes to commiseration. Knowing you are not alone is very valuable. I understand that AIDS is a very political disease and has extreme social consequences, but on a different level, it is a physical disease that comes with very real emotional and physical consequences. I enjoyed Sullivan’s piece because it highlights this.