I was diagnosed with a chronic, incurable disease this week, and I was happy. I called up friends and family, and they congratulated me. What may sound baffling to some, will make perfect sense to anyone who has ever struggled with an undiagnosed illness. I wasn’t happy to have the condition, but I was thrilled to have a name to call the thing that had plagued me for more than seven years. I was so relieved that I sat in my car and cried outside of the doctor’s office. No longer was my strange list of symptoms to be given in apology for why I couldn’t do something (especially when I could do that thing and more on other days). I had a name to give, and while it didn’t offer any treatment beyond what I was already doing, it dignified my saying “no” even though I seemed perfectly healthy.
A name that…dignified my saying “no”.
It is easier to say that I have Myalgic Encephalomyelitis (also know as ME or Chronic Fatigue Syndrome), than to explain that sometimes my blood pressure dips very low, and I have trouble thinking clearly to do simple tasks. I can get so tired that walking from one room to the next winds me. Heat and stress make my symptoms worse, so while I may be able to chop down trees in my yard one week, the next week I can’t even weed my smallest garden. I don’t have special pillows because I’m picky but because my muscles in my neck and upper back tend to knot. And even though I’m young, the joints in my hands, wrists, and hips will sometimes become painful and limit my movements. To make matters worse all these are invisible symptoms. So, even if I explained them all, people can’t see my exhaustion or my pain, only my excuses.
People couldn’t see my exhaustion or my pain, only my excuses.
So, I am happy. Happy to not be perceived as lazy or deceitful when I bow out of an activity. Happy not to be told perhaps I should see a psychologist when I give a doctor my list of, seemingly random, come and go symptoms. Happy that if a new treatment comes up for ME, I will know to look into it. And really, I’m just happy to be done searching for an answer.