This blog post has been a few weeks in the making, but it definitely feels like it is the right time finally. It has now been over two months since I was diagnosed with AS, and the treatment was actually starting to work. During these past nine weeks, the way I have thought about chronic illness has been radically changed. I obviously have much more empathy for people with auto-immune diseases than I ever did before. I guess it is sort of like what Atticus Finch says to his daughter, Scout, in To Kill a Mockingbird: "You never really understand a person until you consider things from his point of view... Until you climb inside of his skin and walk around in it."
Whenever I heard the term "auto-immune disease" I automatically thought of HIV or AIDS. HIV is a disease that contracted- passed from person to person, so in my own blissful ignorance- or to be completely fair to myself- naivete , I never really considered the millions of people who suffer from other auto-immune diseases. Perhaps it is something I can blame on the media, there just was not a lot of press coverage on lupus while I was growing up. Of course, some of it is just plain old ignorance, though. I honestly had no idea that rheumatoid arthritis, psoriasis and multiple sclerosis were auto-immune diseases. And completely in my defense, can all of you who had even heard of Ankylosing Spondylitis before talking to me or reading this blog please raise their hand and come forward, because I sure had never heard of it before I found out I had it (broken record, I know).
So yeah... I now climb around in the skin of someone who has an auto-immune disease. This diagnosis lead me to a quasi-realization. Just as there are varying shades of gray a black and white photograph, there are varying shades of gray in the definition of sick. There is my personal favorite: SICK. That is when someone says something off-color, or is like a car accident, you just can't help but pay attention to them. For example, your friend tells you a racist joke and you find yourself laughing despite its nature. You say about that friend: "Josh has a SICK sense of humor."
This kind of SICK is more a state of mind than a biological state.
Right now, I am unfortunately experiencing the two other kinds of sick. I am Sick. That is a difficult thing to swallow. I have a chronic illness to which there is no cure. I have a pre-exsisting condition that insurance companies don't want to touch with a ten foot cattle prod. That is Sick with a capital S. It is something that defines part of who you are- just like my being gay or left-handed defines different parts of who I am. It is a THING; it is an ENTITY that resides perpetually within my body. The hardest part is that it isn't something foreign in my body that has made me Sick. It is just the way my chromosomes lined up this lifetime. My very genetic makeup has made me Sick. (I don't think I am in denial anymore).
Right now, I am also sick. There is a corollary effect between my being Sick and sick. I have sinusitis and bronchitis. I got sick because the drugs I am taking to lessen the effects of my being Sick have compromised my immune system. As you have probably deduced, being sick with a lower case "s" is when you get the cold, or a flu or even bronchitis, pink eye, and ear infection, food poisoning. This kind of sick only lasts a few weeks, maybe a month if you are really unlucky.
Because I am sick, I cannot have any methotrexate injections that help my being Sick. The methotrexate, for all its skull and crossbones warnings, is actually really starting to work. I am (was) really starting to feel a million times better. I started to feel better than I knew I could feel.
I am not really sure when I will get another methotrexate injection. It won't be very long from now, because the bronchitis will go away within a few weeks. When I am finished being sick, I can go back to being Sick... and I am okay with that.
