I’m afraid you must wonder why I’m sitting here in your office. You probably assume I’m here to look for a cure–or at the very least, to find a way to manage my symptoms. You seem to hesitate to offer hope that we can find either one.
But, in all honesty, I’ve already made my peace with that possibility. I’ve lived with all of these symptoms for half a decade, and they impact every part of my life, every day. I’ve come to terms with the fact that there probably won’t be a magic cure that removes this from my life completely. I’ve even come to accept that there may never be treatments that reduce my symptoms. I can live with that. I already am.
What I want from you instead might come as a surprise: I want a name.
I’ve sat in countless offices just like yours and detailed my long list of symptoms and complex history ad nauseum. I’ve laughed politely as provider after provider has thrown up their hands and joked that I am a medical mystery. I’ve nodded as they’ve told me my presentation is unusual and doesn’t fit any of the usual diagnoses. I’ve endured labs and invasive tests and expensive procedures, and ridden the roller coaster of results. I’ve gone home and cried after each well-intentioned provider has given up the pursuit and sent me away empty-handed to begin all over again with the next provider.
Believe me, I understand that diagnoses are hard to come by. All I ask for is persistence.
I know your ultimate goal for every patient you see is wellness. After all, that’s probably what drew you to medicine in the first place. But some of us recognize that wellness is not in the cards. We understand. We just want to know the enemy we’re up against.
Please don’t make the mistake of underestimating the power of a diagnosis. I’ve lived with the chaos of this illness for so long. I’ve been dismissed or labeled a mystery so many times that I sometimes doubt myself. What may seem incidental to you is the piece I need to cope with this. I need a context for all of the symptoms I live with; a framework for what I’m experiencing. I need a diagnosis to make sense of the chaos.
So here is what I ask: please stick with me. Stay, after the first and second–and third and fourth–rounds of negative tests. Keep at it after we’ve ruled out all of the usual suspects. Don’t shy away from suggesting a diagnosis without a cure. Just stick with me. Believe me. Pursue answers with me.
You hold the key that will help me make some sense of this.