I have Ehlers-Danlos Syndrome. I also have most of it’s comorbidities: PoTS, Dysautonomia, Cranial Cervical Instability, Chiari Malformation, Spinal Stenosis, Spondylolisthesis and Mast Cell Activation Syndrome.
People often downplay the seriousness of my EDS. 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?”
EDS is not just “being super flexible.” It is progressive, painful, incurable and horribly limiting.
Just the other day, I caused a shoulder subluxation when I tossed a pillow across the room to my husband.
I deal with hip and shoulder subluxations multiple times daily. 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 become 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, etc.
It wasn’t always this bad. But after our rollover car accident in 2013, the symptoms worsened seemingly overnight.
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.
Medication helps manage my pain. But it is still agonizing at times. And it will only get worse.
Throughout the years, before my diagnoses, any time I asked for help with the pain, I was treated as a drug-seeker. So I stopped 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.
My advice to those whom don’t understand EDS: Take people seriously. Listen to them. If I had been taken seriously from the start, I could have possibly slowed the progression of the degeneration of my spine.
EDS isn’t just “being super flexible” 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 doctors wouldn’t listen to me, or believe that my pain was as bad as I said, it took over 20 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.