I have long believed in labels. If there is a name for what I am experiencing, I am better equipped to fight it. If I know what I am, I can deal with the world appropriately. Names have power. That’s what Neil Gaiman’s version of John Constantine said. He said it for different reasons and toward a different end, but the fact remains: Names have power.
I have collected labels and names over the course of my life: allergic to food/has eosinophilic esophagitis/is a good student/played tennis/played the violin/writes novels/is a lawyer/is disabled/is a chronic pain patient.
I define myself by what I do and what I experience. The names are like a shield.
A medical ID bracelet naming my allergies makes me feel special and fragile like a unique little glass-winged butterfly, and more than that, it’s a story. I love to tell stories. A scar on my throat is a symbol that others recognize. I have been broken apart and welded back together. I have been remade.
So now I face a dilemma because the surgery is complete and there is no further need for immediate surgical intervention — my doctors have no idea what boxes to check or where to put me on the Western medicine playing field. Last week I saw a rheumatologist at Beth Israel who said, “Why are you here? If I could wave a magic wand, what would you want me to do?”
Well, Doctor, since I have widespread pain, my hands don’t work properly, and you’re supposed to be an expert on that, I would like you to take the pain away, please.
His response: “Chronic pain syndrome of some sort. Let’s dump you on the pain clinic. Now get the hell out of my office.”
(Those might not have been his exact words.)
Googling “chronic pain syndrome” is like bobbing for apples while wearing dentures; you’re not going to be very successful. It’s too close to fibromyalgia, the infamous kitchen sink diagnosis of exclusion (“You don’t have this, this, this, this, or this, so you must have fibromyalgia”). It’s like complex regional pain syndrome, but not quite. It’s similar to myofascial pain syndrome.
I don’t know how to react without labels. It’s impossible to prepare for battle. Living in an undiagnosed state is tantamount to floating in limbo. You remain in stasis until a doctor unveils a treatment that can yank you back through the wormhole. The trick is being able to move forward in life despite not having a name for what you’re going through. That’s the hard part. I haven’t been very successful at just being me. Who am I, under all of these labels and names?
TheDiaryofaSickGirl noted something extremely relevant to this discussion:
I heard a fantastic quote while listening to the TED radio hour on identity stated by Andrew Solomon. He said “As long as you experience your condition as an illness it’s a prison, and once you experience it as an identity, it’s the source of your freedom. If we can treat illness as identities we liberate people into experiences of great joy that would otherwise be closed to them.”
I have some sort of chronic pain syndrome. Okay. I can buy that. But I disagree with that quote on a fundamental level, which is the fact that while I have this pain, I am not this pain. This pain is not me. It is not my identity. By giving it a name, by making it my identity, I give it too much power.
I am not chronic pain syndrome. I am not eosinophilic esophagitis. I happen to have these problems. They are not my identity.
I am not my pain.