When you have got a chronic illness like Lupus, you face three battles. One being the illness itself, the others being either proving you are ill enough or not that ill at all. And it just sucks! In this blog, I write about the three battles of lupus I have faced in honor of lupus awareness month! To start:
So, you have got Lupus Nephritis. Lupus nephritis is an inflammation of the kidneys caused by systemic lupus erythematosus, an autoimmune disease. It is a type of glomerulonephritis in which the glomeruli become inflamed.’
I didn’t hear anything after ‘Lupus Nephritis’. I knew what it meant. Ever since they thought I might have Lupus I had been googling intensively. I knew what it meant theoretically, but wasn’t ready to hear that I had to start dealing with lupus on a daily basis. Although I, of course, had been dealing with it even before I officially knew I had it, when I went to the doctor I had just hoped, for a straight forward ‘take this, do this’ kind of solution.
Okay, so, now I had this disease, it explained why I was so tired, it explained my pain, my fevers, my rashes… It explained everything, but cured nothing. Medicines, which I now had to take daily, where heavy and made things even worse. I now also experienced nausea, dizzy spells, fainting, heart palpitations, and mood swings to name a few. I also developed migraines, tension headache, anxiety and episodes of extreme stomach pain. With every new medicine, there were new side effects and with every year I seemed to develop a new chronic illness. ‘They never come alone’ was my doctors’ response.
The list of symptoms I am now managing on a daily basis is long.
My first battle, the disease itself, is hard.
After two years of having an official diagnosis, I needed a wheelchair. I was in too much pain to get around, I fainted too often and I simply felt better when sitting down. I decided to apply for a government funded wheelchair. The doctor, who was going to decide if I would need this wheelchair, had to judge if I was sick enough.
‘You can walk!?’ he asked. The stigma is real, people ask me this intrusive question all the time. You would expect such a comment from a stranger on the street maybe, but it is everywhere. In the hospitals I need to prove I am in need of help, on the streets I need to prove I am ill enough to use a wheelchair, even though as they say ‘I look perfectly healthy.’ And even to my family I had to explain it a couple of times, before they really understood. I had to explain to the doctor, in detail, why I could walk but still wanted a wheelchair. Battle two turned out to be about clear communication and even now that I know that, it still is damn hard.
Then I went for an interview for college and they asked me ‘How do you expect to study when you are…. Well, in a wheelchair.’ I was baffled. My wheelchair meant freedom; my wheelchair meant I was more capable of going to college than without. But here I was, explaining that I was capable of doing things despite my chronic illness. It felt like I needed to promote myself even harder than people without a disability, like I needed to prove that I was well enough.
Battle three, prove I can still do shit!
The three battles that I have to fight on a daily basis have become part of my routine. I manage them quite well. I navigate through doctor’s appointments, withstand and fight against stigma and fight for my rights, all well feeling sick. That is the truth about me and my lupus.