What I Need Others to Understand About My Ehlers-Danlos Syndrome

There are people who question the validity of my hypermobile Ehlers-Danlos syndrome, because it is basically invisible. Yes, they can see my joints hyperextend far past the “normal” range of motion, however that is the extent of what can be seen without the benefit of X-ray and MRI technology.

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

There are several things I’d like to disclose to you about living with this disabling condition.

Those funny-looking scars I have? They happen because the collagen in my body is not strong enough to create robust scar tissue, so I end up with wide, slightly raised “cigarette paper” scars.

The “parlor tricks” you love to get grossed out by, you know the one I used to do way back when, where I used to dislocate my shoulder and hyperextend my elbow, wrist and fingers? It’s not a “trick.” It’s my joints dislocating, subluxing and hyperextending. It happens in nearly every single joint in my body. It’s very real, and it is destroying my body one joint at a time.

When I worry about losing my mobility, it’s not hyperbole. EDS is degenerative and will continue to affect my body for my entire life. The more connective tissue in my joints that is affected, the faster my joints will degrade. It’s a never-ending cycle of injury, rest and rehabilitation. Yes, a joint subluxing for the average person is painful, and may require some rest and over-the-counter painkillers, followed by some physiotherapy. A joint subluxation or dislocation for someone with EDS can mean months of (more) intense pain, intensive rehabilitation, with a very high risk of re-injury. Now think about this happening in every joint in your body – forever.

When I say “I’m tired,” I don’t mean I’m tired like I sat up playing video games until the wee hours of the morning. I mean I’m nearly always on the verge of tears, because my “tired” is the bone-crushing exhaustion of countless nights struggling with painsomnia. It’s the fact that my tendons and ligaments are extra stretchy, and can’t reliably keep my joints in place, so my muscles work several times harder than yours just to keep my body together. It’s the kind of tired that comes from literally struggling to keep myself together. 

When I have various slings and braces on, it’s because the joints that those supportive devices are on are injured. Yes, all of them. Yes, the location of them often changes. No, I wasn’t in a car accident, and I haven’t fallen while rock climbing. I didn’t hurt myself playing tackle football. I injured myself while completing tasks you probably take for granted. The ring splints I wear? My fingers are so hypermobile that I repeatedly drop things, and can’t open a jar of jam without dislocating a finger. The knee brace? That’s not from cross-fit. That’s from walking down the stairs. The K-tape on my hip? Also stairs. The randomly falling down for no reason? Don’t even get me started.

When I send last minute texts telling you I have to cancel, it’s not because I don’t love you and want to get together. It’s because I am so incredibly tired, and in so much pain that I just can’t leave the house. Trust me, I’m likely crying when I send that text, because I want to see you so badly. Please be patient, and remember, I didn’t ask for EDS.

When I call out of work, it’s for the same reasons. Yes, I do actually want to go to work. I like money as much as the next person. Yes, calling out of work because I just can’t leave the house does have a financial impact on me – my sick days are not paid. I’ve lost opportunities for career advancement due to my conditions. That is an absolutely sickening feeling, the feeling of “not being good enough” due to something I have absolutely no control over.

No. I won’t “recover” from this. There is no cure. Treatment for hEDS is basically supportive care. I will struggle with this my entire life. Will I have ups and downs? Absolutely. I just won’t ever have a day where I don’t need to be cautious of the activities I participate in, and think about how they will affect my joints. No, I don’t want sympathy or pity. I just want you to understand that you don’t recover from EDS the way one recovers from a nasty cold.

Yes, I am sick again. My body is just so damn tired from trying to keep itself together that my immune system is compromised. That means I get sick easier, stay sick longer and don’t “bounce back” from minor illnesses as fast as you do. No, I don’t like it either.

When I say “I’m scared,” what I mean is I don’t know what will happen to me in the future. I neither want nor expect you to “fix” it. I just want you to listen, without judgment. Oh and a hug. A hug would be nice.

When I say “it hurts,” it’s not like an average isolated sprain. It feels like almost every joint in my body is on fire. Remember, my muscles work harder than yours do, and we often have micro tears in our tendons, ligaments and muscles because our collagen isn’t as strong as yours. Chances are, if I say those words it’s because I love you, and I want to help you understand. I know you can’t feel what I feel – and I don’t want you to. I wouldn’t wish this on you, not even for a single day. There’s no contest for who is in the most pain. There are no prizes for the “winner.” I take your pain seriously, and am compassionate when I listen to your story. I only ask that you be kind when I open up to you.

If you want to understand what hEDS is, please look on sites like the Ehlers-Danlos Society website. Google doesn’t always give you correct information. By looking on professionally vetted sites, you’re guaranteed to be looking at the most correct, complete and up-to-date information.

Most of all, remember that there are many things we can’t see with the naked eye – but that doesn’t make them ‘not real.’ You can’t see bacteria, but you definitely feel them when you have an ear infection. You can’t see viruses, but you definitely wish they weren’t real when you pick up a stomach virus and are sitting up at 3 a.m. vomiting for what feels like the millionth time in the last 24 hours. You can’t see EDS, but I feel it… every single day.

Getty Image by ArminStautBerlin