I’ve been sick for a long time and in that time I’ve learned quite a few things about living with chronic illness. I’d like to share them with you. Obviously this is all subjective and I don’t sugar coat things. So don’t get offended or sad.
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- You’re never going to have it all figured out.
- You know those big plans you always make for your life/career/next big event etc. Get used to not knowing what to do next. Things like doctors visits, constantly being angry, and mustering up the energy to get out of bed will get in the way. After a while the regular grind of life you were used to previously won’t be feasible anymore. Adjustments will need to be made and that sometimes means a lot of guess-work on where your future is going to take you. Which leads into my next lesson learned.
- Dreams do die.
- I mean this in the least mean way possible, I promise. A couple of years ago I was on track to be an astronomer. Man, I wanted to be an astronomer so badly. I still love it, I still read every book and article that comes out like it’s my life. But, as I mentioned in the last lesson, the regular grind of life wasn’t feasible and it was making me sicker. Astronomy is no easy major, it takes a lot out of you mentally and physically. Between having epilepsy, getting sick all of the time and in between all that having the most painful periods due to endometriosis I couldn’t keep up. One day I woke up and realized that if I kept going I would not only fail, I would never get better. So I changed my dream, which really is my major and its history. Specifically Viking history. It’s a lot of research and writing, but that is something I find easy and fulfilling that fits in with my lifestyle. There is always something you can do, don’t get discouraged.
- Being alone is not a bad thing.
- When you get a scary diagnosis you kind of go through a phase of “I’m gonna die alone.” And that just isn’t true and it’s pressure from society telling you that you can’t be alone. You’re going to have a lot of long lonely days and nights even if you’re not alone. Learn how to be alone with yourself. And I mean alone, no Netflix or YouTube. I mean alone with books and writing, or any hobby you enjoy, do it alone. You’ll find out things about yourself you never would have known, and ultimately be more comfortable with where you’re at.
- Exhaustion is your frenemy.
- Get used to it. It will keep you home and in bed more often than you think. You can either take this as a bad thing or roll with it. Exhaustion is normal when you’re chronically ill, it will happen and it will strike at inconvenient times. Don’t let it get you down, it’s a good reason to say no to a lot of crap you really don’t want to do. Pushing yourself will only make things worse and saying no to that half-assed get together with the promise of “brunch” (hung over lunch) will make things better.
- Your friends and family will never truly understand what it feels like.
- Have you ever tried to explain what you feel like after a seizure? Yeah, it doesn’t come out the way you intend and they won’t get it. Of course, you could have the most understanding , lovely and supportive people in your life but they will not ever understand unless it happens to them. Get used to it. They won’t understand why you suddenly can’t say words, and they can’t see that weird floating blur or smell rags burning. It’s all you, it’s your experience and you’re kind of alone in it.
- It gets worse.
- I’m not being dramatic, I told you I don’t sugar coat things. You think getting that diagnosis was bad? Going home and explaining it to your friends and family? NO. There are things that are worse. There will be the day you walk into the doctor’s office for some symptom you think is a side effect and walk out with some actual fear for your life and an order for a spinal tap. And that is when you realize it could just keep snowballing. Your meds will change, your symptoms will change and your pain will change all of the time. It gets worse.
- A sense of humor is required.
- The moment you got your diagnosis you know you went right to doctor google which led you to some official website for your illness, you said “pfft bullshit” which led you to a weird google search that landed you on a shit Instagram page full of crap inspirational quotes that actually don’t make sense. NO. Do not follow, or make your own quotes or repost that crap. It takes you nowhere and makes you into someone who takes shit too seriously and cries over every little thing. Laugh at that shit, move on and do something productive. Like sleep. Crack jokes about that time you fell down, yeah it was embarrassing but fuck it was funny. Make fun of yourself, make fun of those dumb shits and their quotes that say “Love means never having to say sorry”. Oh fuck off.
If you want some awesome perspective and have some time to kill here are some good books to get you started.