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7 Things I've Learned From Ehlers-Danlos Syndrome

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When I was first diagnosed, I had a small meltdown… OK, a big meltdown. Now, two years on, I am learning to adjust. I am proud of the way I have adjusted. I have my ups and downs but I am grateful for the little things in life. I’m even grateful for some things I’ve got because of my illness. I wanted to share some of them with you. After all, we could all do with a little bit more self-appreciation.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

1. Knowing I am not making it up! This is a big one for me. Since I was a child I’ve known there was something different about me. I knew I wasn’t like all the other kids. I remember being quite a small child and comparing myself to other kids, knowing I was not like them. I had aches and pains. I was more tired than other kids. I took longer to recover from simple medical procedures. For me, getting a diagnosis was bittersweet. I felt vindicated, like I wanted to shout, “In your face!” at anyone who had ever doubted me. But at the same time I still wasn’t happy. The realization dawned on me that by being right, I actually have to live with a medical condition for the rest of my life. But one thing I knew was I wasn’t a hypochondriac, I hadn’t been making it up and I am not a drama queen. After the initial shock wore off I was super grateful for that.

2. I learned a lot about friendship. Some people simply don’t know how to cope with your illness; you have to learn to be OK with that. Some people can’t figure out a way to be supportive when there is no solution. You might drift from friends you’d have least expected, but you might find that others become your besties. Remember the people you love the most are also most affected by your situation. They are fighting their own battle in coming to terms with what you’re fighting. So cut them some slack. I believe they’re doing the best they can. If they’re not giving you what you need, you can’t change that. You just have to accept it. Sometimes you get the best support from the least likely places, friends you didn’t consider to be your nearest and dearest step up to the plate and are there when you need them the most. Be brave, share how you feel and share your struggles – you never know who might surprise you. Maybe those further from your heart are able to look more objectively at your struggle and offer the best advice. Who knows? All I know is my buddies are the best and I love them!

3. I learned what I love. When you have a limited reserve of energy, you learn to prioritize your day. You learn to allocate a portion of your energy for things you want to do. I’ve learned to care less about the little things. At first I was always frustrated that there was stuff out of place or the dishwasher needed emptying, but after a while I realized these things can wait until the energy comes. They don’t really matter in the grand scheme of life. Nothing bad will happen if you don’t make your bed. What matters is how you choose to feed your soul. I learned to save my leftover energy for the things I love, like being creative, cooking, date night and visiting the amazing people I love. Become resourceful, you got this! You can find other ways of doing what you love.

4. I have learned how strong I can be. Granted, I have no choice. My options are fight like a wildcat or not, and become owned by my condition. It’s up to me. It’s Hobson’s choice: neither option sounds that appealing, but faced with the two choices, fight and be strong is the obvious one. It’s not always the easy one. It’s OK to get mad and shout and feel like rebelling against your treatment. Sometimes you’ve just got to let that crap out. Then dust yourself off and carry on fighting. When people say things like, “You’re so strong, I wouldn’t be able to keep going like that,” I often want to shout, “Of course you would! You’d have no choice!” But instead, I hold it in and smile. Then, once I’ve calmed down a bit, I think, damn! Maybe I am strong and maybe it’s OK to be proud of how strong I am.

5. I’m grateful for the realization I was grieving. It took me a long time to realize I was grieving for my old life and the old me. I couldn’t describe how I was feeling. I was sad about what I lost and angry about what my body was doing to me. I missed the carefree person I was and resented the wreck I had become. When I realized what I was feeling was grief, I could start to process it and let go of the old me. I allowed myself to begin repairing the broken bits. I stopped being so sad and eventually things started to make sense again. I felt like the color came back to my life and I could start to enjoy the little things again. It’s OK to grieve, just not forever. It’s a process you have to complete, almost a rite of passage for the chronically ill. You can make it to the other side.

6. You can use your illness as an excuse to get out of stuff you don’t want to do! It’s great! Of course, it’s really annoying when you actually can’t do something you wanted to do because of your illness, but every now and then you get a little bit of payback in the form of a ready-made excuse. It’s OK to say you can’t do it. I have been really bad at this – my mind is fiercely independent and stubborn (my body isn’t). Admitting I can’t do something doesn’t sit very well with me. But sometimes I have to hold up my tremoring hand and say, “I’m out.” Sometimes it isn’t that you have to miss out; sometimes it’s adapting and finding a different way of doing it. Admitting you need help is the first step to finding a solution.

7. I’m grateful for not caring what others think. Truth be told, I’ve never really cared too much about what others think of my appearance. I wear what I want, I have odd hobbies. I’m comfortable with myself. Now I have mobility aids and splints and that’s something I can’t change. I can change how I feel about them though. When I first got my glasses (before “geek chic” was a thing), I picked a pair of big purple ones. My husband said, “If you gotta wear them, you might as well own it!” So I own it! I’ve adopted the same approach to my medical aids. I’ve glittered my walking stick, I’ve painted my splints and I tie-dyed my tubigrips. I’m wearing them – they’re not wearing me! People can see them anyway so I might as well make them fit my style. Get the flashing lights on your wheelchair wheels. Get the pink chair. Stick rhinestones on your walking stick or frame. Customize your splints. If it makes you smile, do it! You’re still you!

Originally published: November 11, 2016
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