20 Things I Learned About Ehlers-Danlos Syndrome Before I Turned 20

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I’m about to enter my third decade of life. That’s sort of a confusing way to say that I’m turning 20 in less than two weeks. So what are 20 things I’ve learned about chronic illness, experiences I’ve had, things I wish I could say, things I wish people knew, or things that get me through?

1. This is not my fault.

I did not choose this life. And never would I ever have stood up like Katniss did and yelled, “I volunteer!” if someone had offered it to me. Don’t take that the wrong way, though… Just because I didn’t choose it or volunteer for it, it doesn’t mean that I haven’t come to appreciate this life I’ve been given. But I didn’t ask for this. I didn’t pop my knuckles too much, or drink too much Diet Coke as a kid and develop a genetic chronic illness. I have to stop trying to blame myself for my chromosomes. But if we want to get technical, it’s really my parents’ fault… Just kidding, Mom and Dad.

2. I am not alone (and neither are you).

If you’re reading this then that means that you’re searching… searching for advice, support, or just the sheer knowledge and comfort that you’re not the only one who struggles. This leads me to number three.

3. Chronic illness and invisible illness can make you feel alone in a world with billions of people.

Even the people closest to you sometimes can’t make sense of it all… the random fatigue, the cracks and pops, the depression or anxiety that is caused by your chemical and biological makeup that you have no real control over. No matter how many times I tell my heart not to race and send adrenaline freely overflowing every time I stand up, it just still seems to not understand. And most of the time other people don’t understand either. That’s a very lonely feeling. That’s probably one of the things I’ve struggled with the most. But I know a few people who have Ehlers-Danlos syndrome and similar chronic illnesses and I have this site and it helps you remember that there are so many people like you that feel immensely similar.

4. No, there isn’t a cure, but that doesn’t mean give up.

Hearing that there is “no cure” and that “you’ll be combating this for the rest of your life” can be one of the most devastating things to hear. It can just make you want to give up. But you can’t. You know why not? Because then the illness wins. And though it may be difficult and extremely bleak, you have to push on.

5. Life will be different but that doesn’t mean your life has to be over.

What do you do when you’re a high schooler who has been told this disease will be with you forever? What does that mean for the picture of your life you had? Will I ever be able to function properly again? Will I ever be able to live on my own? Or finish high school? Or go to college?

Trying to figure out how your life is going to look is kind of like tie-dyeing a shirt at home. You think it’s going to look just like the picture on the front. And you tie-dye the shirt, you let it soak in, you rinse it out, you let it dry. I don’t know about you but whenever I’ve tie-dyed it has never looked as “perfect” as the one on the cover, but it still looks cool and sometimes turns out even cooler… and it’s unique, you’ve made it your own. That’s kind of how life shifts when you get diagnosed with a chronic illness. And just as a spoiler… I did finish high school, I do live on my own (with two really cute cats) and I’m a full-time student in college. It’s not exactly how I envisioned things. Actually, it’s nothing like I saw it. But it’s OK, it’s almost cooler and I definitely made it my own.

6. Listen to your body.

Try to take inventory of how you feel your best and worst and in between. Then listen to your body when it tries to tell you things. If you’re feeling dehydrated take extra measures to combat that, if you’re having a flare up take it easy.

7. Sometimes you shouldn’t listen to your head.

I would bet $1 ( and only $1 because I’m a broke college student) that your head sometimes tells you that you can’t do something because of your chronic illness that you actually can (and should) do. Sometimes you just have to tell your head to shut up. And sometimes your head says “OK go harder” during a workout even when you’ve reached your limit. Once again, you should probably ignore that “go harder” advice… you probably will regret it the next day.

8. The power of “No.”

Wow is this a big lesson that I’ve had to learn. It’s OK to say no to that lunch invitation, or that invitation for a hike that’s just too much, or that extra project. It’s OK to say no to 18 credit hours — trust me, it’s really OK.

9. There is power in saying no and not trying to explain yourself.

You don’t always owe people an explanation, even though it may feel like it. You don’t need to explain to a stranger or even your closest friend that you don’t want to do something, or you can’t because of your disease, etc. It’s sometimes OK to decline without feeling like you have to go into great detail.

10. Treat yo’ self.

Did you get out of bed on your most painful days? Treat yo’ self. Did you ace that test? Treat yo’ self. Remember to treat yourself even if the victory seems small or insignificant. Positive reinforcement can be effective.

11. Have a “someone.”

For me, my someone is my mom. She knows probably more than I do about EDS. She’s done extensive amounts of research to try to understand. She’s seen me sob many times because of my illness. But she also encourages me to do what I can and to not lose heart. So that being said, she’s also seen me get my diploma, and have some great successes. I kid you not, I would not be here without having my someone. Find someone and really inform them, let them in, lean on them, be brutally honest about how you feel, mourn with them, celebrate victories with them, live this chronic-illness life with them.

12. Set realistic goals.

You probably can’t run a marathon without any training. I don’t think I could… even with a lot of training. Maybe your goal is to go to class all week even if you don’t feel your best. Maybe it’s to rest when you need to. Maybe it’s to go out and be social once this week. Don’t set a goal like losing 20 pounds in two weeks or anything unrealistic like that because it will most likely let you down.

13. Be honest about your goals.

Are they unrealistic? If so, see number 12.

14. Be upfront.

Let the people you’ll be around or that you’re committed to working with or living with, etc. about your illness, and help to educate them… They can’t be supportive or compassionate or understanding if they have no idea what you’re going through.

15. At the end of every flare-up is some sweet sweet relief, if only for a moment.

16. Pick some songs that instantly put you in a good mood and have them ready to go when you start to feel down about your chronic illness.

Music can be so so so therapeutic (and distracting, if you can’t get pain off of your mind).

17. Everyone’s experience with chronic illness, invisible illness, and disease is different.

Yes, you may have the same disease, but they might not experience things to the degree you do and vice versa. Everyone deals with things differently, and people’e symptoms aren’t always the same. That being said…

18. Don’t try to compare or compete when it comes to chronic illness.

I’ve come into contact with people who seem to want to keep some kind of sickness score. Please don’t try to tell me that your experience is worse or drag me down into your pity party just because we both have the same disease. It’s not a competition of whose experience is harder. They both are hard. Respect other people’s experiences and realize that it’s different so they can’t really be accurately compared.

19. It’s OK to be sad and have hard days. Be kind to yourself. 

I think that one just speaks for itself.

20. You are not your illness. You are you. And you are great.

I am not my illness. I am not my illness. I am not my illness. My illness doesn’t define me. My illness doesn’t define me. My illness doesn’t define me. C’mon, everyone together…

This is another hard hard lesson to grasp. It kind of has that Teflon quality. It just doesn’t stick. If I’m not careful I can slip back into this mindset where my illness is all that I am. But that’s wrong. Just continue to remind yourself every time your mind starts to go there. Repeat it over and over again if that’s what it takes.

My illness will no longer destine me, confine me, or define me.

So there you have it… 20 things I learned about chronic illness before I turned 20. I hope that maybe you can relate, or that maybe it helps you through your journey.

 

Source”themighty.com

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