22 August 2018

some thoughts about chronic illness

If you follow me on social media, you probably know I'm chronically ill: I have IBS and chronic fatigue syndrome along with some health problems that I’ve had for as ling as I remember but that have never been professionally diagnosed. It’s not exactly something I try to keep a secret - I think it’s very important to talk about these things because avoiding them just creates a stigma around them. 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.

Let's start with the most obvious part: the symptoms. I constantly have a fever and can't go out in the sun without sunscreen 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, sometimes even 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. Now, don't get me wrong, I love my walking stick - it allows me to have at least some independence when it comes to moving around - but 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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