10 May 2016:
The average time to diagnose Lupus is 6 years, according to the Lupus Foundation of America website. Why did it take 11 years for me to be diagnosed?
Partly, the answer to that is what I mentioned on Day 4, that it takes time for enough symptoms to present to make a diagnosis. But if the rheumatologist I was seeing for the first 11 years had run the right test for the anti-Sm, then I might have been diagnosed much sooner.
Part of the problem, then, is education. It’s really important to have a doctor that will read and stay up to date, and take a personal interest in your care. But the rheumatologist knew about the test, she just never bothered to run it. Why? We’ll never know for sure, but I would guess that she never believed I was actually ill.
Most of my memories of visits involve me trying to prove the existence of my symptoms to her. I remember holding out my hands, telling her they were swollen, but she didn’t see it because my bone structure is so fine. I remember her making me ‘point to where it hurt’ when I told her about pain– anyone who has ever had systemic inflammation knows, it’s really hard to be so specific.
I had second opinions: a doctor at Hartford Children’s Hospital told me it was psychosomatic, brought on by the stress of switching high schools, and suggested I should see a psychiatrist. (Dude, I switched schools after I got sick!) I went to the Mayo Clinic, but they couldn’t follow me for a long period, and so were unable to make the diagnosis, though their treatment recommendations were correct.
I can’t count the number of doctors who simply didn’t take me seriously. Gender bias in patient treatment is very real, and is compounded by other factors such as age. I’ve attached a really excellent article if you’re interested– there’s tons of stuff out there. Also, my doctors in the US didn’t speak to each other. The GI doc didn’t call the rheumatologist, who in turn never spoke to the dermatologist. That’s more a failure of the American system– in the UK, those notes would have been consolidated on the NHS system.
I think this experience is unfortunately quite common among people with Lupus, and other difficult to diagnose chronic illnesses. Have you had similar experiences?
Wondering what’s going on with these posts? Check out my explanation HERE!
This Isolation Life 