My life with Ehlers-Danlos Syndrome

4 minute read

I have Ehlers-Danlos Syndrome (EDS) Hypermobility, also known as “type 3”.

Let me be perfectly honest, its scary as shit to me.

I look as normal as everyone else on the outside, I attempt to keep up with everyone else. I am however in pain pretty much every day.

Please, do something for me. Think about your body right now. What hurts? Really think about it. Go over your entire body, starting with your toes. Do your toes hurt? Continue all of the way up your body. Please, stop reading. Do it now.

I will do the same with you right now.

My toes, they are sore. Specifically my left foot more than my right. I bend them, they crack, I feel relief for a moment.

The middle of my right foot, where all of the joints are, its sore. No idea why, stretching it does nothing to help. Its just a nagging pain.

My left ankle, has a nagging pain in the joint.

Surprisingly both knees feel fine.

I get to my hips, both are so sore it hurts to move them in any direction, oh crap, I went too far and my hip popped out…

My elbows, shoulders, wrists, fingers, the ribs in my back … I think you get the point.

I am 32 years old. The last 4 years have been significantly worse for me, specifically with my hips. I wake up in pain every morning, no idea how much I tossed and turned during the night. My girlfriend constantly complains about how much I move in my sleep.

Why do I share this? To complain? Nope. If you knew me, you would know I rarely mention this to anyone, except for those truly close to me and those who help provide me support.

I had someone tell me today “Well, it could be worse”. Guess what asshat, I know it could be worse. And infact its going to get worse, much worse.

I fear the point in my life where I may be stuck in a wheelchair because my hips refuse to stay in their sockets. Where it hurts to type every day, or where I need to wear finger splits to keep my fingers from popping out.

I do not need you to belittle what I am going through, or worse yet, remind me what I am going to feel like in 10 years.

I get regular checks on my heart, just incase I end up having issues with the valves in my heart. I have my lung capacity checked. I have my eyes checked.

But you know what? I did not make this post to sound depressing or whine. Infact I made this post to say that none of this is going to slow me down. I still play softball and volleyball. And I will continue to for as long as my body and my doctors let me. Will I pay for this later? Probably. But do you know what? I love it. I am living. I am enjoying my life and not trying to think too much about “the worse” that is ahead. Because trust me, I know its coming.

I am going to answer a few common questions I get:

What is EDS?

It is a defect in structure, production, or processing of collagen.

What is collagen?

Collagen is the “glue” that holds tissue together. A good example is when you get older collagen production slows and it causes saggy skin, etc. This affects joints, skin, basically all tissue in your body.

So what does defective collagen do?

Think about when you pull on an elastic 100 times, what happens? It slowly gets larger, right? Now take the same elastic and put it into the sun, now pull it 100 times. My body is the sun-bathed elastic.

So what happens when you get older?

Same as everyone else, your collagen breaks down, but my collagen was already defective to begin with, the process is amplified.

Is there a cure?

No, there is no cure.

Whoa, I’ve known you for 10 years, how did I not know this!?

It doesn’t come up in conversation. How I am feeling is pretty “normal” to me. Its genetic, which means it is passed down in families, my father also has it, however my symptoms are worse than his.

So you can bend in weird positions?!

Yep, but doing so is really bad, so I try to avoid it.

Can you fit in a box?

My girlfriend asked me this on our first date. She saw me crack my fingers (bad habbit I do when I’m nervous) and my fingers bent back, so that opened the door to the conversation. The answer is “I’ve never tried”.

Now that I feel completely vulnerable, I’m going to end this post. I hope that everyone who has read this, when one of your friends in the future says they had a bad day, or feels crappy, you remember we are all different. Be supportive. Don’t be a dick.