The words that mold us: I was checking a new... - LUPUS UK

LUPUS UK
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The words that mold us

katidid
katidid

I was checking a new message from my doctor who is ordering a cardio study. I scrolled through mostly to double check the day, time, location, etc. But then I ran across the description of me as a patient. Like everyone here, we've seen our Dx and descriptions and such so many times. I don't know why this struck me. Not in a bad way - maybe a little sad(?) - but i caught my breath when I read it again. Can't tell you why, but ... well, not sure what to say.

Amazing how just a few words can really bring reality home:

"40 yo female encumbered by severe autoimmune phenomenon."

It's 100% accurate, oddly poetic and sadly true. I appreciate her recapping it like this. But it also sounds untouchable. Out of reach. Far gone?

xoxo

3 Replies
oldestnewest

Don't take it personally Katidad.

My Rheumy had to recomend me to a different doctor to check my bowls (lovely I know) I received a copy of the letter he sent where I was described as a "uncomplaining women with lupus" I thought that was so nice considering all he hears is my complaints about living with lupus!

It's hard to see our new life narrative summed up in a few succinct words, but 'phenomenon' is from the Greek 'to shine' katidid, and sharing your experience here is helping others...you're a star! 🌠xxx

I can understand why that would be disturbing and yet touch you because of its acknowledgment of what you live with. Having access to medical records is a double edged sword. Doctors know patients are reading their evaluations, so they tailor what they say, I suspect. When they talk to one another, you get the true sense of where the patient is in terms of severity. To see the word “severe” means, I think, your lupus is affecting vital organs and difficult to keep in remission. Is that your sense of yourself?

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