I wish I could tell you what’s wrong with me.
Since January 2014, I’ve seen over 50 doctors and undergone countless tests ranging from simple blood draws to spending five hours in a sweat chamber covered in purple powder. Based on hundreds of thousands of dollars of tests, appointments and treatments, I have received 26 potential diagnoses. All are partially true. None is entirely true.
If you ask the chief of neurology at Lenox Hill, I have autoimmune limbic encephalitis. If you ask the experts at the Mayo Clinic in Minnesota, I have central sensitization syndrome, possibly triggered by Lyme disease. If you ask my internist, an infectious disease specialist at NewYork-Presbyterian, I have an autoimmune condition that is outside the current realm of medical knowledge. If you ask me, I’d say I have an amalgamation of all the above — and that the name honestly doesn’t really matter to me anymore.
For a long time, the search for a diagnosis was the most important part of my life. Having a diagnosis would have confined an amorphous array of unmanageable symptoms into a definable enemy that I could study, measure for size, and destroy.
It would also have made going to parties a lot easier.
Having a diagnosis would have confined an amorphous array of unmanageable symptoms into a definable enemy that I could study, measure for size, and destroy.
If you tell someone you’re sick, they want to know what you’re sick with. The diagnosis informs their behavior. Should they be worried? If so, how worried? Are you contagious? Is it fatal? Is it something that could happen to them too? And people are naturally curious. Few things pique our interest more than guarded, mysterious language. If someone says, “I have a cold,” we say, “Oh that’s too bad. Drink lots of fluids and feel better soon!” and then we move on. But if someone tells us, “I’m going through some health issues at the moment,” we have a million follow-up questions — though,...