Tuesday, October 13, 2015

Vox: Julie Bien on Lupus

Check out this post found on Vox: First Person. It's written by a young woman with lupus. Although Sjogren's and Lupus are two distinct diseases, still they're both autoimmune in nature; and the patients in both disease groups share very similar feelings and concerns. It's entitled: I have lupus. Here are 8 things I wish people understood about my disease. Her discussion about the seventh "thing" resonated with me. I've put up a small portion of her post, so head over there to read the piece in it's entirety.
by Julie Bien on October 12, 2015

7) I'm not going to get better.
I had (emphasis on had) a very well-meaning friend who would regularly check in on me. I appreciated her concern. But every single time I had a good day, she would say, "See? You're totally getting better!" I appreciated her optimism, but it became frustrating after a while. Yes, I still have pretty good days, and sometimes even stretches of good weeks. But they always end. I'm not being dramatic —those are the medical facts. My friend's incessant baseless positivity felt after a while like somebody telling their buddy with an amputated arm, See, it looks like it's growing back.
I spent a lot of time trying to be patient with my friend. But the longer it went on, the clearer it became that she was never going to actually hear me. She would make plans to do things I couldn't possibly do anymore, and when I reminded her of my condition she'd say, "But it's a couple months away, you'll be able to by then."
There is no cure for lupus. As far as medical science is concerned, chances are pretty high that I will always have lupus. I might go into remission. I might not get substantially worse. But I am never getting "better."
I know I am sick. Of all the people who are bummed out by my ill health, I guarantee I am the unhappiest with the current state of my body.
I am also the most up to date with current treatment options, clinical trials, lifestyle changes that might help, and general understanding of my disease.
When you insist over and over again that I will get better, you're indirectly telling me that I'm either lying to you about my prognosis or that I'm too stupid to understand my disease and treatment options. Worst of all, you are intimating that I'm not trying hard enough to get better.
If you aren't my doctor or a researcher specializing in autoimmune disease, then please — I appreciate support, but not baseless, grating optimism.

1 comment:

Julie Bien said...

Hi there! Just wanted to say thank you for sharing my article... and if you ever want to commiserate, I'm happy to lend an ear!

And I also just want to send good, as-pain-free-as-possible vibes your way :) Those can't hurt, right?

All the best,

Julie

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