I was officially diagnosed with Systemic Lupus Erythematous (SLE) a year ago, after years and years and years of suffering with being sick, if not every day, then every other day. I had an inordinate amount of misdiagnoses, cross-diagnoses, and near-constant medical mysteries. After diagnosis doctors were like: Oh, of course – Lupus! No wonder …
I didn’t used to talk too much about being sick, because one week the doctors might say you have ‘a virus’ or ‘an infection’, and when it didn’t go away after several weeks they’d say we’re going to test you for XX serious/life-threatening/fatal illness. And, over the years I got tired of telling people I almost had this disease, or that horrible illness, and the doctors were 98% sure I had some form of XX. Often my blood work was so kooky – they’d just go ahead and treat me, because not treating me made no sense either. But, I felt I had started to sound fickle, or even worse, like I was lying.
I also had Lyme Disease in the past; and Glandular Fever – this was missed, imagine being so sick every day that you and your doctors miss you having Mono because you usually feel like utter shite on a stick. Mono was unremarkable for me. Mono was my normal.
All of these illnesses have one thing in common Chronic Fatigue Syndrome/M.E. It’s a hugely misunderstood diagnosis, in my opinion. It has a bad rep. I remember once a very close friend momentarily forgetting that I’d—at one stage—been diagnosed with M.E., made a remark about a workmate with M.E. being unable to do a work-related task, and how she and her boss had been joking behind their back about them being “chronically lazy hahahahaha”. The memory of it still stings.
I imagine you’ve had the flu at least once. Now, I mean full-blown flu. I mean struggle to remain sitting upright, head in a vice, feel like you’ve gone 10 rounds in a boxing ring flu. Not — man-flu. That’s my best explanation of Chronic Fatigue Syndrome. Imagine it never goes away. Imagine you were desperately sick for a couple of weeks 20+ years ago, and never ever ever ever got better.
What do you do? Do you stay in bed for the rest of your life? Can you hold down a job? Do you accomplish great things?
I’ve been having moments I wish I could send back to my teenaged self while she grappled with her new diagnosis. She’s hoping that she’ll be a writer … and she can’t see a way to doing any of that while she has ME/CFS. She’s desperate for the illness to go away forever. I daydream about going back in time and telling her it won’t, it will come back and stay, her worst fear will come true. I’d also tell her that while she is disabled by illness, she will: … teach at university (she’s a real nerd, she’ll love that); see her writing published in a book; … And sometimes these cool fun things will coincide with the absolute worst dips in her health, or will even happen because she’s sick.
But she probably wouldn’t believe me tbh.
Kaitlyn, you made me cry.
I am back in Ireland. Australia is very, very hot and sunny. My Lupus was killing me. If not physically, then emotionally. I had to stay indoors alone all day, every day, in a dark room because of my photosensitivity. It was no kind of life. It was cruel. Luckily, Ireland is much less sunny, tis very rainy for sure, and although my Lupus didn’t stay on the plane (durr! boo! hiss!), I can go outside a little, and I have a very strong and very kind support system here.
Nothing is perfect, some things are shite, other things are improving, and:
“Every day’s a flu-day!”