22 August 2018

some thoughts about chronic illness

If you follow me on social media, you probably know I'm chronically ill. It's not exactly something I try to keep a secret. And I'd like to be like one of those motivational posts on tumblr and say that my illness doesn't define me, but fuck that. It does. It's not the only thing by far, but it would be stupid to pretend it's not one of them. So let's talk about it.

To begin with: according to my doctors, there's a 98% certainty that I have an illness called systemic lupus erythematosus, or SLE for short. For those of you who don't know what it is (which is probably going to be the majority of you), it's a disease in which your immune system attacks the healthy cells in your body, and can cause pretty much anything from hair loss to kidney failure. There is no cure for the illness as it looks different for every person affected by it. As for why doctors aren't 100% sure, it's because with illnesses like this, blood tests often come out negative or different each time they're done, which is what happens with me. 

And now that you know this, let's chat about how I fucking hate everything about it.

Let's start with the most obvious part: the symptoms. I constantly have a fever and can't go out in the sun for more than five minutes without developing an insanely itchy rash on my face and arms. Top that with digestive issues (I'll spare you the details), fatigue and joint pain whenever it gets too hot or too cold outside and you have my every day symptoms. They get about ten times as bad during a flare, to the point where I struggle to get out of the house on my own. 

And speaking about getting out of the house: thanks to the fact that this illness has fucked my joints up, I need to use a walking stick - not all the time, although I always carry it with me if I'm going to be out for a long time just in case, but according to my rheumatologist it's gonna get worse with time and eventually I'll need a wheelchair. "Eventually" being anywhere between 15 and 35 years from now. 

Now, don't get me wrong, I love my walking stick - it allows me to have at least some independence when it comes to my movement while without it I'd just have to hold on to someone and walk really slowly all of the time. That being said, I hate that it makes people think differently of me.

I hate that it makes people think I'm faking being ill - for what, attention? Because holy fuck, if being in pain every single moment of every single day is the price to pay for human attention, I think I'll pass.

I hate that people look at me like I shouldn't be using a mobility aid because I'm just twenty years old.

I hate that a lot of people stop giving a shit about you being ill and therefore being unable to do certain things once they realize that you're not getting better. And at this point the motivational tumblr post would say something like "you don't need those people in your life" and that's a lovely sentiment, but the fact is that often those are the people you thought would never do that. 

I hate waking up tired no matter how much sleep I got.

I hate knowing that it's not gonna get better.

I hate that it took almost two years for me to get diagnosed because a whole fuckton of doctors said "you're just experiencing those symptoms because you're overweight, you should lose some weight". 

I hate that it's something that I have to live with and plan around while I should be going outside, making friends and getting drunk or whatever it is healthy people my age do. 

I hate the "don't let it define you" attitude. 

But even through all this, I still wouldn't change a thing about my life. This illness being a part of it might not have been planned, but it is what happened and I have to learn to live with it. So here's something for anyone who might be struggling just like me. Something I wish I had been told two years ago when I first got ill: 

It's probably not gonna get better, but it will get easier. 

You'll find people who'll stay in your life because they know you're worth it, illness or not. You'll find new ways to have fun and live your life, new hobbies to fill your free time. Just don't give up, okay? Do that for me. It might not seem like it now, but it will be worth it in the long run. Just hang in there.

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