Being seronegative is majorly disappointing, on so many levels. It makes it incredibly hard to get a diagnosis. It makes it even harder to relate to other spoonies.
As one doctor told me, I have the story of someone with Rheumatoid Arthritis… but my blood won’t talk.
Just writing about this makes me want to cry, because it’s so damn frustrating, beyond words. Doctors don’t get me. Other sick people don’t get me. I don’t even get me.
Of course, this isn’t the first time I’ve ever been unable to fit into a category. I’ve always been different. And while it’s a good thing in some ways, not belonging starts to take its toll. I tell my story across Twitter and Instagram hoping that someone will stumble across my words and assure me that I’m not the only one, that they’re in the same boat. And hey, while we’re at it, let’s compare notes.
But in the eight years since I got sick, this hasn’t happened.
I just started Sulfazine because my rheumatologist can only guess that I have enthesitis related arthritis. My blood won’t talk, and nothing shows up on my x-rays and MRIs (except for that one time when no one could explain to me what the radiologist called possible cysts and fluid in my bone marrow). My mystery illness behaves like an arthritic autoimmune disease, but it’s been nearly impossible to tell which one without concrete blood work. And I’m always only borderline—what my rheumatologist calls seronegative. We can only hope that the Sulfazine works and then, based on the results, maybe find a diagnosis.
I don’t want this, but honestly, I’ll make peace with whatever it is, if only I could know what.
Until then, I just can’t rest.