What I Wish You Knew: The Side of EDS No One Sees

As many of my fellow zebras know, people often downplay the seriousness of this disorder. Not out of malice, mind you, but due to a lack of understanding. “Well it can’t be that bad, EDS just means you’re super bendy, right?”

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

EDS is not just “being super flexible.” It is progressive, painful, incurable and horribly limiting.

I caused a shoulder subluxation the other day when I tossed a burp cloth across the room for my husband.

I deal with hip subluxations multiple times daily. Yes, even during, ahem, “intimate times.” It’s about as fun as it sounds.

My fingers stiffen and lock up at random, and I have so little strength in my wrists and hands that I can’t even open a jar of pickles by myself. I’ve gotten very good at just popping my joints back into place when they start to slip out.

I often have to force my body up out of bed or off a chair or couch with the aid of a cane because my knees and ankles hurt so bad. I sound like Rice Krispies cereal when I walk. Snap. Crackle. Pop. Click. Crunch.

When I walk, I often have to brace myself to keep from stumbling and falling. I either use a cane, or brace myself on furniture, or the shopping cart, or the stroller, etc.

It wasn’t always this bad. But after I had my daughter, the symptoms worsened almost overnight. Maybe it was due to the hormonal changes I went through during and after my pregnancy. My doctor informed me that “sometimes that happens.”

I am in excruciating pain daily. A good day is a six or seven on the pain scale. A flare day is easily nine to 10 or higher. At times I feel as if my spine is collapsing in on itself. Sitting hurts. Standing hurts. Lying down hurts less, but it still hurts.

Kratom helps my pain be very manageable. But it is still agonizing at times. And it will only get worse.

I can’t afford physical therapy, or specialists. I probably need to, but I can’t. Even with insurance, the cost is just too far out of reach.

Throughout the years, before my diagnoses, any time I asked for help with the pain, I was treated as a drug-seeker. So I quit asking for help.

And now that I know what’s wrong, there isn’t much I can do about it. At the rate my joints are deteriorating, I will likely end up in a wheelchair.

I don’t talk too much about the bleak reality of my health conditions because frankly it’s very depressing, and I try my best to stay positive.

It’s the hand I was dealt, and I don’t have any choice but to keep moving forward, and trying to raise awareness for my conditions.

Take people seriously. Listen to them. If I had been taken seriously from the start, I could have possibly slowed the progression of my osteoarthritis.

As it stands now, I may not be able to have any more children, partially due to the risk of premature labor that EDS can cause (I only made it to 36 weeks with my daughter) and partially due to the strain it caused from carrying and birthing her.

EDS isn’t just “being super bendy” or “being double-jointed.”

It is excruciating. It is awful. It is misunderstood, and the severity is often downplayed.

Listen. I can’t stress that enough. Listen.

Diagnosis of EDS can take years. I showed signs and symptoms of it practically from birth. But because no one would listen to me, or believe that my pain was as bad as I said, it took over 10 years to get a diagnosis.

And now it’s pretty much too late for me. I can’t reverse the damage I have done to my joints, but maybe I could have slowed the progression if someone had just listened to me.

To all of my fellow zebras, I get it. I understand. And I am making it my goal to raise as much awareness as I can for this disorder. Because if I can help even one person, it will all be worth it.

Keep fighting and advocating for yourselves and don’t give up. You are worth it. Your feelings are valid. Your pain is not unimportant. You matter.

Much love to you all.