Ehlers-Danlos Syndrome - Type 3
2. What has this illness taken away from you?
Trust in certain other people. Freedom and mobility.
3. What are 3 positive things this illness has brought you?
At the moment, I can’t think of anything. I have a lot of positive things in my life, but none of them can really be attributed to this disorder. I refuse to give that Ehlers-Danlos bitch credit for the good things I’ve accomplished, and the good people that I know.
4. Did you have to change any goals you had because of this illness? Are you happy with those changes?
I had to forget about losing weight. I will never be athletic. I might not be able to have children. I’m not happy about it. I can live with it, but I’m not going to say that I’m happy and content.
5. What is your favorite quote?
“If we find ourselves with a desire that nothing in this world can satisfy, the most probably explanation is that we were made for another world.” -C.S. Lewis
6. What things do you do when you are not feeling well to help keep your mind off of the pain?
Reading, sleeping, watching tv, playing with hamsters, knitting (when I can).
7. Are you in remission?
No. Never will be. Some days are better than others, but it’s always there.
8. Do you have a good support system to help you through?
I can’t say that I do. My husband is supportive and helpful, as much as he can be. My family still doesn’t believe that there’s anything wrong with me. They mostly think that I’m just fat and lazy and should stop complaining so much. I’ve got a few sympathetic friends. But I’m the one who has to deal with the pain every day.
9. How do others react when they hear what your diagnosis is? Do they know about your illness?
Most people are confused and sceptical. Like, they don’t think it is that big of a deal, like I’m just making excuses for being fat and out of shape.
10. Have you ever been judged by your illness?
I first started having symptoms when I was about 8 years old. I had pain in my ankles and knees. My third grade teacher, Mrs. Anderson, told my parents that I was a hypochondriac. My parents believed her. When my knees subluxed on a daily basis, my parents didn’t take me to a doctor. When I was 12 years old and running caused crippling back spasms, they didn’t believe me. (What healthy 12-year-old has back problems?!?) The stretch marks caused by the skin problems related to the illness were written off as caused by my being fat. I got terrible grades in gym class because it hurt to walk or run. But because my parents were told that I was faking, I never got any help. And even now, most people look at me and assume that I walk slow because I’m fat. They never consider that maybe I’m fat because I can’t walk very well.
11. Have you ever been told, “But, you don’t look sick”?
Only all of the time by everyone.
12. What is your favorite song to listen to in order to get you in a better mood?
“Don’t Wait For Tom” by Over the Rhine, or if I’m in a really bad mood, “One Girl Revolution” by SuperChick
13. Do you have something special that you carry around to help you reflect and get you through tough times?
14. What is your “comfort food”?
15. Imagine there was a cure for your illness, what is the first thing you would do/say?
I think I’d say, “Where do I sign up?”
16. If you had an entire day with NO pain, what would you do?
Just one day? I’d probably go to the zoo or something like that and spend all day standing and walking, even up the hills. It’s amazing how much I miss being able to do things like that.
17. Do you think making jokes/laughing about your illness has helped cope with it at times?
Yeah. I refer to myself as a “floppy-joined mutant.”
18. What are some things you do for fun?
Knitting, writing, video games, playing with hamsters.
19. Since being diagnosed, have you done anything for the cause (walks, etc.)?
Walks? That’s kind of funny. If I walk more than a few blocks, all the tiny bones in my feet dislocate and I end up in crippling pain, barely able to stand. So, no, I have done no walks.
20. What is a word of advice you can give others who are chronically ill?
When you know there is something wrong, demand answers. When you are in real physical pain, never listen to any doctor who tells you it’s all in your head. They’re being lazy and dismissive and that’s not a doctor’s job. It took me until I was 30 to get diagnosed, and it cost me so much. I lost trust in my family and myself, and endured years of mental illness as I was told that what I was feeling wasn’t real. That’s not fair and it’s not right. Demand better for yourself.
Sleeping is no good for me. If I sleep on my side, my back gets all messed up and hurts. If I sleep on my back, my knees hyper-extend and hurt for days. So I’d just like to give up sleeping.
I’m going to put in my two cents on this debate.
I have a Kindle (an older one, but not a super old one). I bought it because there are hundreds of old classic books that are in the public domain that I wanted to read. They are free to download, but hard to read on a laptop. So I got a Kindle, to read those books.
I’ve got a couple hundred books on my Kindle, and I don’t think I’ve ever paid more than £3 for a book. Because if the ebook is more than that, a used paperback is probably cheaper, and I’ll buy that instead.
Yes, I still read “real” books. I don’t know anyone who has an eReader that doesn’t. And no, I’m not going to get all poetic and semi-erotic about how much I love the feel and smell of paper. I don’t care. It’s the words that matter, not how they’re presented. I have read books I loved and books I hated in both formats.
One thing I’d like to mention is that as a semi-disabled person, I sometimes do prefer my Kindle. I have type 3 Ehlers-Danlos syndrome, and if I’m reading a paper book, holding it open can sometimes make my fingers hyper-extend if I’m not paying attention, and cause pain. I have never had that problem with the Kindle.
The book I’m reading now uses a really small font in some parts, and I wish I could adjust it because I’m getting old. But it is a paper book, so I can’t. I either need to squint or get reading glasses.
So a paper book, especially if it’s a large one, can leave me squinting and in pain.
At the same time, I love that I actually own my paper books. No one can delete my account and remove them from my house like they can do with the Kindle. I bought most of them used, and if I decide not to keep them, I can give them back to the charity shops I bought them from. Sure, if I don’t like a Kindle book, I can just delete it, but that doesn’t benefit anyone else.
So my answer to the Kindle or paper question is “both”. They co-exist in my house and there’s no reason they can’t co-exist in the marketplace in general.
I always think that reading is the important thing. To paraphrase John Green, “I don’t care HOW you read. I care THAT you read.”
I’d rather have 100 Kindle books that I’ve actually read than 100 leather-bound books that have never been opened.
Joints that are in pain today: left sacroiliac and right shoulder. Sacroiliac is generally unstable and shoulder subluxed in my sleep. Isn’t Ehlers-Danlos Syndrome fun?
A question for other people with Ehlers-Danlos Syndrome (or Hypermobility of some other type): Can you recommend a good, comfortable pair of shoes?
I value comfort over looks and heels are out of the question. Plus, I live in Scotland so they need to be at least marginally water-resistant.
Do any of you have really good comfortable walking shoes that don’t make your feet feel like every tiny bone in your foot is dislocating when you walk?