Chronic Illness: a disease lasting more than 3 months that generally cannot be prevented by vaccine, cured by medication, nor do they disappear.
Not all chronic illness is visible. Actually, a lot are invisible. I had no idea how common it was to be struggling with chronic, invisible illnesses until I was diagnosed. But that didn’t make me feel any more normal or any less isolated.
People with chronic illnesses get really good at hiding it, which makes no sense. If I knew other people my age were also struggling when I was diagnosed, I could have been a lot happier. I would have felt a lot more supported and as though it was manageable, and I could live through it. But, now I’m older. And I know that I’m not alone, and I really hope that I can help you feel the same way by telling you about the last decade of my life.
I’ve had a chronic illness since I was born. My chronic illness started causing concern when I was 14. I was diagnosed by the fourth doctor I saw within two months when I was 16 after receiving two false diagnoses. It wasn’t fair. When other girls were worried about making varsity, I was worried about no one finding out. I didn’t tell my close friends until I was 18. That’s not fair. Yes, it wasn’t fair to them that I wasn’t honest. But chronic illness isn’t about them. It’s about me.
Chronic illness isn’t fair.
Chronic illness started by being paraded in front of medical nurses, doctors, and students that forget how young you are. They forget that you still have a concept of modesty. Sometimes, they forget that you’re scared and want to know what’s wrong with you and focus on their own solving of the medical mystery. Chronic illness isn’t about my medical #squad, but they made it about them. And it’s about me.
Chronic illness is having people make it about how hard it is for them. They tell you that they understand what you’re going through. But they don’t, and you can’t even tell them that. Chronic illness isn’t about those close to my life. It’s about me.
Chronic illness is having the same genetic code as many other people. But, you’re different. It’s harder. Your DNA is the one that didn’t line up just right. Your DNA is the one that gave you the giant middle finger. Chronic illness isn’t about my siblings who had the same chances as me, and I sometimes make it about them. It’s about me.
Chronic illness is making plans not knowing if you’ll actually be able to leave the house next Thursday. It’s wanting to be able to go out with your friends more than anything, but not being able to physically make your body go. It’s wanting to push yourself to do these things because you don’t want your friends to forget about you. Chronic illness isn’t supposed to be trying to keep up with the Joneses. It’s supposed to be about me.
Chronic illness is having more and more medical issues discovered about you. It’s having them all come from that one chronic illness that threw a wrench in the mix. It’s waiting for the day you get diagnosed with arthritis because with the scientific research behind my ailment, it’s a when for me. Not an if. Chronic illness isn’t about living in fear. It’s about me.
Chronic illness is not actually remembering what it’s like to not be in pain. It’s watching The Fault in Our Stars and relating more to a young girl saving her “on a scale of one to ten” ten than to a young girl getting her heart broken, despite the fact that you’ve been both of those things. So you start comparing days because 1-10 doesn’t seem all that right, because 1-10 seems like there’s some fixed place that I start from, because 1-10 makes it seem like I know someday that my pain will be a zero. Chronic illness isn’t supposed to be about just getting through the days. It’s supposed to be about me.
Chronic illness feels like the most unfair thing that I can’t figure out why I deserved.
And that’s the thing. I haven’t done anything wrong, but I’m still insanely embarrassed to tell people the truth. And that’s not fair either. My chronic illness doesn’t make me any less of a woman, any less of a sister, nor any less of an individual that contributes to society. Often, chronic illnesses are seen as not a big deal because a majority aren’t death sentences. but, the fact is that a majority do have side effects that can be. Many side effects are all consuming and some of them feel like the end of the world.
If you’re just like me, remember that there are a ton of us. If you aren’t, you are so so lucky. Please never take it for granted.