Living With Ehlers-Danlos & Hypermobility Syndrome

Growing up, I knew I was different. I just knew. But now that I know why, I’m not sure different is the correct word. Special? Well, no, we’re all special in our own way. There was just always something a little bit off about myself. Nobody knew it. Nobody ever noticed it, until I did when I was fairly young. I was in pain constantly, excruciating pain. It never stopped. Will never stop… Okay maybe I need to explain some things.

I was born with a rare disease called Ehlers-Danlos, like cancer it has multiple branches off of it. I have the Hypermobility Syndrome version. My joints are all overly flexible. They all swing instead of stopping when it hurts, like a loose door hinge. That’s the way my mom has always best described it at least.

We first found out something was wrong with me when I was about six, at the time I was doing both dance and gymnastics. Dance had never bothered me, but when I started gymnastics I had sprained my ankle and it just never seemed to get better, and then I sprained the other and the same thing happened. And kept happening and happening, doctors called it “growing pains” because I was growing so tall, so fast. We weren’t sure what to think but believed them, and I continued on with everything. I then started softball and the pain got a little bit worse. It was starting to hurt to just walk. I quit gymnastics, then I quit dance and softball to by age twelve to focus on one sport; volleyball, which I started the year before quitting everything else.

Playing volleyball was easily my favorite thing on earth, I started actually playing on a team when I was in sixth grade after practicing and messing around with my sister’s team and her friends. Mainly at that point I played because I could have an escape from my grandmother’s sudden death, it gave a good distraction but I was actually really good at it! So I continued and worked my butt off to become the best I could be. At first the pain wasn’t even there! I was able to slide across that floor like nobody’s business and not even have a single pain but normal soreness afterwards, but then my eighth grade season happened…

The summer of eighth grade is when I was diagnosed with Hypermobility, we weren’t really sure the extreme of it at that point. The doctors just knew that from looking at my MRIs and x-rays I was banging bone against bone and swinging past the point that my body should have made me stop at, the bones in my ankles were physically bruised because I was spraining both ankles every time I just walked. After being diagnosed by my third doctor over this same problem in five years, I was put into physical therapy and made to wear ankle braces, ankle braces and PT? Yeah, at thirteen I could handle that! Heck, some people then wanted a brace to have a cool injury story to tell… yet I didn’t have one, I just had to tell people they’re because of a disease. Now thirteen and having to explain a disease continually? Not as easy to handle. In all honesty, it sucked.

I’ve never been a person who wants the center of attention and I especially don’t want people’s pity, yet I was getting both. Getting attention because I did a good job at something is one thing, but because you’re being treated like a science experiment by doctors? Please, who would want that? I certainly didn’t, but I had to live through it without a choice.

During my fall eighth grade volleyball season is when things started getting really bad with my Hypermobility, my joints were aching constantly, everywhere. I remember coming home from practices or games and crying cause of how bad it hurt. Not to mention there was a lot of drama, but different story for a different time. And then a few days right before our biggest game of the season, we were playing a game against a team in their gym. So of course I wasn’t used to their floor and it was really slick, one of our girls had already gotten hurt and we were starting our third set when a ball came over the net to our side, I had called the ball and my friend saw I had a better angle on it if I just slid, so that’s what I did… and well did I slide! I slid straight into her knee with my shoulder, my shoulder went backwards and I didn’t even feel a single thing that happened, her knee -under her freaking kneepad- was bruised and my shoulder was uglier, completely dislocated, although I didn’t know that.

The one thing about having EDS/hypermobility is you don’t feel pain all the time, and well with this, I certainly didn’t. Honestly I just thought my shoulder was a little bruised and continued playing for another fifteen minutes, I even shook off my coach when she was concerned I was hurt cause I didn’t honestly think I was. But when me and my other friend went other to my mom, my friend was like “Um, your daughter’s shoulder doesn’t look right…” And my mom just looked at me all freaked out and I honestly had no clue what was wrong, it didn’t hurt that much, so of course I thought nothing of it and went outside with my friends to hang out. By then I was starting to feel a little bit of pain and was starting to move my shoulder around a bit, then I felt a POP. My shoulder instantly felt better, so me and my friend went to tell my mom and I’m pretty sure it freaked her out more, and I mean she was already ready to take me to the ER, but she was just like ‘Well if you feel better then okay,’ and I honestly thought I did feel better, but we went to the doctor in the morning anyway. The pain in the morning was almost unbearable, which for anything the day after is always worse, but when we went to the doctor and had it looked at we did discover I had dislocated my shoulder really badly. It caused my collarbone to be separated. Now naturally because of my stretched out ligaments my collarbones were both already separated by a pinky’s worth, but now my left was two pinky’s worth, so about an inch. I was out for the rest of that week till our big game on Friday and after that game, let’s just say my sets were never the same.

As a setter one of the most important things is how your shoulders are placed when you’re going to do a set, with one shoulder now messed up that arm was always lower making my sets more carries than anything, so I had to work even harder than I already had been. Working harder meant more pain and more pain meant more icing and more icing meant more time soothing my body than actually working on my skill. As much as the pain, which was getting even worse throughout my entire body at that point, would let me I was working, working, and working.

Spring comes around and I was personally asked to play on a private school’s team by their coach. I was pumped to play under her! Both of her girls played volleyball in college and she was amazing, but right before the season I kind of hurt my knee. My orthopedist told me I had tendinitis in both of my knees at only thirteen, from too much diving and sliding he had said, so I added on a knee brace to my evolving collection of ones I needed to wear. Also the knee injury and having a massive ovarian cyst put me sadly behind the other girls practice wise, but I was still getting as much knowledge as I could even by the sidelines. But after that season the pain just got worse!

As time went on the pain got increasingly worse, in freshman year I suffered from a dislocated knee and multiple finger dislocations not to mention my wrists were hurting constantly, on top of all the pain that year I was extremely stressed out and would take all of my anger into working outside on volleyball constantly which of course helped nothing but to make matters worse. Even after the season stopped all I was doing was working on my skills like anybody else would and just making myself suffer through more and more pain.

Finally before my birthday, right after freshman year ended I gave myself a severe concussion from hitting my head on my windowsill, it put me out for that entire volleyball season, and well after that things just went downhill. I was sick constantly all winter and then almost broke my wrist and sprained it terribly which put me out of playing on any spring volleyball team. It was horrible! And then I popped out my hip falling off the couch and just nothing was going right for me.

Once again I was being treated as a science experiment by doctors going to so many different ones. My regular doctor, orthopedist, ophthalmologist, rheumatologist (for my EDS), dermatologist, and allergist, all for one freaking disease! I was breaking out in hives constantly so they were having my blood drawn for testing, seeing what I’m allergic to, etc. But hyperactive skin can also be a part of EDS, so even though we did discover some allergies it all goes back to my EDS, everything wrong with me does. Including my acid-reflux, headaches, among other things.

So after taking a massively deserved break from practicing volleyball I decided to finally get back into the swing of it in mid-July. The first day out at our volleyball net with my mom, I kid you not the first day ended up with me crying out of pain! I was sluggish the whole time practicing, which isn’t typical for me, and then I was just feeling this weird pain when I started serving… Then I felt it, another POP, but this time including a pull, and in my right shoulder. All I really remember was just screaming and falling to the ground as soon as the pain fully hit me. My mom was honestly scared to death, I was scared to death. We got me inside and on an ice pack as soon as possible, but nothing helped, so once again we went to the doctor the next day. It took several weeks before I got an MRI and we discovered I had almost tore my labrum and that my collarbone had hit a bundle of nerves when it went forward during the serve and caused my arm to be numb for a few days. But that wasn’t all we discovered…

That was the day I could have sworn my life ended. My orthopedist loved how dedicated I was to volleyball, he had known me since before I even started playing, so he hated delivering news I couldn’t take. But he knew better him do it than my parents. So he told me I couldn’t play sports anymore, my body physically couldn’t take it anymore. It was so hard hearing that. A part of my spirit died that day. I lost everything my life had been about since I was two. I couldn’t handle not having that part of myself anymore, so I didn’t do anything but sit and pray that maybe the doctor was wrong, I could continue on with my sports, yet I couldn’t… I really couldn’t anymore. And it sucked, it sucked so badly.

Most athletes go out because of a massive injury or they’re too old, but I had to go out to prevent a massive injury and my body thought it was too old and had already had enough at barely age sixteen! It was hard to live day in and day out like this. Knowing I was done with what I had spent most of my life doing. Watching my friends play was the hardest part though, because I had to constantly remind them why I couldn’t play anymore, it was terrible. Then on top of my friends playing I had two siblings who both played sports all the way until the day they graduated and still do, I felt like a massive disappoint to my family because I was different from them. Plus I was meant to be the kid who played volleyball in college, I already had colleges wanting to look at me my junior and senior year, so not only did I feel like a disappointment to my family but also to those colleges that could have held my future in their hands.

I had never resented having my EDS more than in that moment. Nobody could ever understand what I went through during that time, nobody will still ever understand what it’s like to live through it. Although having EDS and hypermobility has caused major draw backs in my life, I have had some major pluses with it as well. I’ve been able to use my story to inspire people, who although don’t have the disease but are ready to give up. I tell them to play their sport for me, don’t back down, play for those of us who can’t. Because there’s a lot of us who can’t. Although not everybody will understand what it’s like to wakeup every morning in pain, to be worried if you’ll hurt something that day, to worry about every little part of yourself, there are those people who will support you through it and even through your tough times will need your downfalls to help with theirs.

Since having to quit sports I’ve been made fun of a lot for begin clumsy and lazy because I suddenly didn’t play anything anymore, when quite frankly that’s not it at all! That’ll never be it, because I was told by my doctor to stop even though he didn’t even want me to. And now every single day I will wakeup in pain with joints stretched out like a rubber band. Every single day I will be scared of what might happen to my body. Every single day I will miss what I can no longer do. But every single day I will also thank God that I didn’t need surgery because this disease has saved my ligaments from tearing. Every single day I will be glad I can share my story of what I’ve gone through to inspire young kids or even adults who could be going through the same thing. And every single day I will thank this wretched disease for bringing my true self to light, that my life doesn’t have to revolve around sports and causing myself pain and having to explain my every single injury, but that my life is unique, because my body is unique and different.

So yes, I’ve always known I was different. Special even, but I am thankful. Because I can teach people something they don’t know about. I can always learn new things I didn’t know about my inner body and how it works. It’s amazing what something that seems so small to somebody without EDS, is so big to a person with it. So please I ask you, don’t think just because somebody looks normal on the outside, that they’re normal on the inside. Because anybody with EDS certainly looks normal but we’re not, nobody’s normal because there’s no such thing as normal. We all have our own downfalls to ourselves mine is just a little bit different and more rare, yours might not be. but don’t worry because you can always know you’re not alone because there’s always somebody suffering too.

That’s why I wrote this, to reach out about what it’s like living with EDS. You can google the facts all day long but you’ll never actually understand what it’s like until you speak to one of us who have it. So I hope I explained it well enough for you to get what it’s like to have it.

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