I took a long, hot shower tonight. Hot showers are my guilty pleasure. The heat and the standing in one place can trigger both mastocytosis and POTS symptoms. I can make myself do a lot of unpleasant things. I will not sacrifice this. I cannot make myself take a lukewarm shower. I just deal with the symptoms.
Tonight, I was in the shower, singing along to Operation Ivy, looking down at my bright red, splotchy legs and purple feet. The purple feet in the shower is a very classic symptom of POTS. It is a symptom I have had every single time I have showered for years. But tonight, it bothered me for some reason. I didn’t want any external confirmation that I was sick. It’s hard when you are literally living inside of an organic shell that reminds you at every impasse that it is deeply, fundamentally flawed. There are days when I don’t even want to look at myself.
I was accused of Munchausen’s Disease shortly before I received my diagnosis in 2012. The doctor told me that I needed to see a psychologist to be evaluated for Munchausen’s because there was nothing organically wrong with me. I called her bluff and went to the eval. An hour into the two hour appointment, the psychiatrist stopped making notes and ended the exam. “You don’t have Munchausen’s,” he said. “If you do, you’re not doing it right.” He wrote an exam note that he didn’t know what was wrong with me but that it wasn’t psychological. A few weeks later, I was diagnosed with mast cell disease.
The strangest thing about that situation is that a tiny part of me was hoping that this was all psychological. I hoped that I could receive therapy and feel my feelings and that it would make my health problems go away. It seemed easier than constantly fighting with doctors and getting an endless litany of tests that highlighted problems but never a cause. I was still undiagnosed at that point and I was tired. Very tired. And this little part of me was willing to accept that I was crazy if I could just feel better.
The result of repeatedly being accused of faking or lying or being crazy is that you start to wonder if you are. Even years later, you still feel the impact of those accusations. I was accused of inventing my disease more times than I care to remember. The result is ridiculous: II sometimes wonder if I’m really sick.
It doesn’t matter how much tangible physical evidence I have to prove this fact to myself. It’s like my mind just sort of breaks once in a while and stops accepting that I’m sick. It would be easier for me to accept that I might be crazy than that I will never get better and I will never be healthy again. The idea of forever with this body and these diseases is crushing.
I’m not crazy. This is real. I live under the burden of all the ways my body fails me. I will live with this burden every day for the rest of my life.
I am aching tonight in a way I haven’t in a while. I have bone pain in both legs and pelvic bones. All my long bones are throbbing. I have recently had blistering hives and diffuse bruising again. Last year, those were the first symptoms of vasculitis. In this moment, I don’t think I have vasculitis again, but there’s no way to know except to wait and see what else develops.
The bone pain is keeping me awake. So I’m just sitting here, wishing I were crazy.