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Ehlers-Danlos Syndrome

Hypermobility Syndrome, Invisible Illness, and Me

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Picture 153

Showing The Hypermobility In One Of My Wrists

My whole life, I’ve known something wasn’t right. Master knew something wasn’t right too. Actually, ever since I was a kid I have had to deal with various physical struggles, and it wasn’t until this past year that I talked to a medical professional who had a good idea what was causing my injuries, and other problems. The past couple of years have been the worst. I’ve been dealing with injuries left and right. I have had to deal with people telling me that I’m fine, or nothing’s wrong, or that I just have anxiety. (News flash: I don’t.) I have dealt left and right with constantly being left out of the things I love to do. I have had to stop doing some things, and no matter what I always seem to sprain and hurt myself. It was maddening.

Last November or so, I was seeing the physical therapist for a torn hamstring. I’ve torn my hamstring more times than you can imagine. Really. He gave me a full head-to-toe exam, and told me he was worried I might have Ehlers-Danlos or Marfan Syndrome, and he wanted me to be seen ASAP because it was possible that those syndromes could lead to complications (some of them quite serious). I went to the doctor who referred me to a geneticist, and had to wait like a good dooby for several months to get my appointment. I waited patiently, and tried not to think about it. Actually, I wasn’t supposed to see anyone until this coming January, but as it turned out, there was a cancellation, so I was able to be seen yesterday.

We drove all the way into town, and Master bought me a soymilk latte on the way in. It was a nice drive. When we got there, we spent two hours talking to the geneticist and his assistant. I was made to bend this way and that. They let me show them what “tricks” I could do. In the end, they decided to categorize me as having Hypermobility Syndrome instead of Ehlers-Danlos syndrome, due to the fact that I have never had a joint dislocation. However, if I ever find myself having dislocations then I am to go back for further evaluation. I was also told that the treatment is basically the same whether or not it is EDS or HS, and in fact, many doctors consider them one and the same thing.

I honestly am sitting here, writing this, very mopey and sad. I am so thankful and pleased that I do not have Marfan Syndrome or Ehlers-Danlos syndrome type 4 (which are both deadly), but the fact that I absolutely do have a connective tissue disorder is so depressing. I feel like it is just one thing after another for me, and the worst part is that I’m not ever, ever going to get better. While both Master and me kind of knew that I had a variation on this disorder, we were both hoping that perhaps I’d just run into a long series of bad luck. Not so much. I have a connective tissue disorder and it’s here to stay.

There are things that I’m not supposed to do now: Don’t lift anything heavy. NEVER stretch a single muscle. Don’t ever go through your full range of motion. No yoga. No contortion. No contact sports (though, Master and me have decided to fuck that one. We aren’t willing to give that one up. Period.) No swimming in a cold pool, and in fact, it’s better if I splash around and don’t actually swim. Stay out of the sun (though, that’s nothing new). No cardio. No jogging. Ugh.

I know this isn’t the end of the world. There actually is one really wonderful thing about all this: I have an answer to what has been going on with me all my life. I was told yesterday that my GERD and POTS are directly related to this disease. POTS is the reason why Master jokingly calls me his “fainting goat”. Knowing that there’s a reason behind it is something that is really validating and relieving, but that doesn’t make it any better.

Being born with these illnesses, and knowing there is no cure is so depressing to me that I can’t even begin to express in words how upset I am. So few people will really understand how hard it is having an invisible illness.. Unless they have one themselves. You don’t see POTS. You don’t see GERD. You don’t see Hypermobility Syndrome. At least, not at first glance. You can watch me pass out. You can see me bend or stretch my muscles and joints. You can see me in a splint or with a broken bone that won’t heal – but on the outside I look just like everyone else. So, most people think I’m just making it up. (Because I have nothing better to do with my life, obviously.) I have had doctors (and mainly dentists) treat me like scum because they are sure I’m making up that I can’t have this drug or that, and many more just plain don’t believe that POTS even exists. (I assure you, it does.)

So where does this leave me? In a pretty depressed and lonely place, because I often feel completely misunderstood and completely outcasted because of the medical bullshit I’ve had to put up with over the years. The doctor didn’t give me a whole lot of hope. He told me that I was basically going to be stuck dealing with these injuries for the duration of my life. He told me that there’s not a lot you can do to help. He did tell me one thing. I am allowed to do strength training. He doesn’t want me to build much muscle, but he wants me to strengthen what I do have. I’m supposed to use no heavier than one or two pound weights and do 25-30 reps. He said that’s what my “workouts” have to be like now, and that I need to “own it”. I couldn’t help but laugh! I will fucking own it! Master got me a couple of two pound weights yesterday. The doctor told me to watch Master do a couple of reps first so that I could see what a normal person’s range of motion is, and then to copy him. Master seems sort of excited about this. He has shown me a couple of motions already. I think he just always likes these hands-on things with me.

I’m relieved that this isn’t deadly. I’m relieved that Master is so supportive. I’m just sad that I’ve spent the last three or four years on the couch with various injuries and that isn’t going to go away, ever. In the end though, this is just one more thing to overcome. I’ve gotten this far, and I know that I will persevere through this. Tomorrow (which is today, as I’m writing this on the 22nd) I will wake up and I will face the new day with far more cheer and determination than today. Bad news always makes me sad and mopey for a day, but there won’t be time for that tomorrow. Tomorrow there is only time for winning.