Today is World Lupus Day, on this day I usually spread awareness and my own story but this year it feels different. After mostly being in remission and only getting the occasional flare for the past six years, my Lupus is relapsing and I’m feeling the affects much worse than I had.
This year I’ve been diagnosed for exactly half of my life, and as many with chronic illnesses, I was ill for a long time before that. I don’t remember my life before Lupus. That being said I was only 16 when I diagnosed with Lupus, meaning that it was an unbelievable life change for me and made life massively restricting for me. So understandably I struggled to accept the limits of my body and pushed myself far too hard.
My late teens and early 20s were spent passing out drunk from not accepting that I couldn’t drink as much as my peers, this happened at least 3 times a year. It’s actually quite shameful to think back on it now. I also worked myself far too hard and then gave up and failed a lot because I was afraid to ask for help and looking like I couldn’t cope.
I held a lot of deep rooted ableism and was determined to overcome my illness. I didn’t realise that disability is a long game and it can’t be beaten.
The way I always describe Lupus to people who don’t know is “my immune system can’t tell what it should be fighting so attacks everything in my body. Basically my body hates me” I laugh when I say this but it’s true.
There’s no part of me that hasn’t been affected. Hair loss, eyesight, skin rashes, mouth, nose and throat ulcers, arthritis in my wrists, hands, feet, ankles and knees, osteoporosis in hips, migraines, fatigue, sickness, bloating, UTIs, kidney and liver problems. There’s also light sensitivity, fainting if I get too hot, brain fog, heart murmur, risk of blood clots and mini strokes.
It took a lot but in recent years I’ve come to terms with my illnesses and disabilities and I’m grateful to have a platform that also empowers others to do the same. That’s why it’s harder to admit that I’m struggling to accept my illness again.
In February, after 18 months of medical menopause, I had a bilateral oophorectomy (both ovaries removed) to go with my hysterectomy in 2017. I almost instantly went into full menopause and this unfortunately triggered a Lupus relapse.
After getting used to how my life was with Lupus and building my life around that, it’s been galling to have to adapt it even further.
I was used to regular aches and pains but now everything hurts. I’m starting to use my cane more again, and while I’m not ashamed of being a cane user it makes my disability very visible to others and I see a change in how they treat me. I become someone they need to treat with kid gloves.
I know this image is mostly in my head and my cane means freedom, but the pain is the exact opposite.
I already work from bed a lot of the time because working from my desk is too exhausting, but now I find it almost impossible to work without a nap. The fatigue is the hardest part, it’s all encompassing and stops me from doing everything.
The most upsetting part was when I started losing my hair again, my hair is a big part of my identity so to be losing it was devastating. Up until last week I had long ginger and red hair down past my boobs, but I made the decision to get it cut up to my collar bone. I feel more like myself with it like this and I also don’t have to see such long strands of hair coming out.
The main difference is now though that I’m older and (mostly) wiser, I know my limits and I’m not ashamed to admit when I need help or afraid to say I need a break. I’m lucky to work from home and work for myself, which means I can set my own hours and only work when I need to. However it also means I’m in charge of taking time off which any freelancer will know is easier said than done.
As a disability activist, journalist and of course editor of this lovely place, it’s difficult to be wrestling with my own negative feelings around my worsening illness, but I know it’s not something I have to work through alone.
To be honest, having Lupus is sh*t and I hate it, but I can’t change that. I don’t have to be positive while my own body is trying to kill me and I shouldn’t be expected to.
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