All told, I was sick without explanation for four and a half years before I was diagnosed with a combination of chronic Epstein Barr Virus and late stage Lyme Disease. Although I’d been through years of diagnostic imaging, each of these diagnoses only require blood tests (though my fist Lyme test was equivocal, so I had to follow it up with a second, expensive Western Blot test). The other thing they required, though, was excluding enough other diagnoses for my insurance to pay for those tests and a final referral to the specialist who performed them.
Treatment for chronic EBV is pretty straightforward. Treatment for late stage Lyme Disease is not, and has involved a lot of physical pain. In short, I had to get worse before I started to get better. The pain was nothing, though, compared to the relief I felt at having names for what was so terribly wrong with me for such a long time.
So I knew what it was, but it was so much more than just a diagnosis.
It was the end of “maybe it’s all in my head.”
It was release from limbo and a path forward.
It was an admittance card to sick and disabled community I desperately needed and couldn’t fully access without a diagnosis.
Folks still waiting for a diagnosis already know these things, and I honestly wish each and every one of you the answers you so badly need.