I received test results today from a recent doctor visit. I have a positive ANA and other markers indicating that I may have Lupus. This was something that was ruled out in previous years, but has now come back around.
I’ve been having a lot of reactions to this bit of news. I’m trying to stay out of going tragic about it. I feel deep in my core that this could be the root of my illness. I know some people say Lupus is Lyme and visa versa but really, “who the feck knows?”. A lot of information is thrown around on the internet that has no factual basis in science, but is accepted as truth because of its popularity.
I started to consider what it would mean if further testing reveals that it is accurate. I felt that an enormous burden would be lifted from me. Everyone knows Lupus sucks. NOBODY wants it. A lot of people don’t know what Lyme is, or think it’s something that crazy people are making up. And the people who think this the most are the medical professionals in our society who experience us. So we must be crazy, right?
If this diagnosis were confirmed, it would mean I could have a legitimate title to what has been happening to me for the last four to five years. Perhaps people who have doubted me will feel what I have felt for a couple of moments. Perhaps people who have judged me will see me in a different light, as a person with an illness instead of a person making bad choices. Maybe I wouldn’t have to feel as guilty as I do for not working, not being a contributor to this sick and messed up society we are living in.
I would be more compassionate with myself because I would stop doubting the legitimacy of my illness. It would validate my experience that I’ve known all along that something was terribly wrong with my body. It seems as if it could change my perspective completely. I realize all of these things could be said about Lyme as well. But somehow in my mind and in society at large, Lyme is not enough.
It’s been 24 hours or so since I received this news. In spite of my desire not to be tragic, I’ve become so anyway. I feel as if I was over-optimistic yesterday about how things might change in light of a new potential diagnosis.
First off, Lupus is about as difficult to diagnose as Lyme. People with Lupus have to fight for diagnoses and recognition from the medical community just like people with Lyme do. Even if I show up with lab results indicating Lupus, the medical community may still insist that I don’t have it. Obviously, no one wants a diagnosis of Lupus, or Lyme disease for that matter. I don’t know how this information will change my journey, if at all. People in the Lyme community will insist that it’s really Lyme, that everything is Lyme. I’ve grown tired of this perspective. Because the next step in that process is that antibiotics are the answer. I just don’t believe in this line of thinking. Lots of people who have tried antibiotics (including myself) have not gotten better. I’ve also grown tired of the “If you aren’t getting better with treatment, it must be mold”. All of these circular paths are total mind fucks for me.
I think sometimes about how as a society (myself included) we try to protect our children when they are young about the truth of life. We attempt to paint it as a beautiful journey, where you can achieve anything if you work hard enough for it. The truth of the matter is that life is ruthless. Life takes no prisoners. Good people get bad diseases.