What No One Told Me About Ehlers-Danlos Syndrome

I have Ehlers-Danlos Syndrome (EDS). It affects the collagen in my body, and along with it comes dislocations, subluxations, chronic pain, and fatigue. I was diagnosed with this three years ago when I was 14, but I had a lot of other health issues.

My EDS wasn’t that bad, so it got pushed to the back burner until just a couple months ago, when it rapidly got worse. I wasn’t sure what was happening to me, why my entire body felt like it was breaking. But then I remembered something they told me I had… Aye-something…Inlos-something…Ehlers-Danlos! I remember my doctor saying it was the reason I was injured often, why my elbows stretched the other direction, why my ankle caused so many issues, but that’s about it. No one prepared me for this. No one told me my life would be like this.

I’ve come up with a list of things no one tells you when you’re diagnosed with EDS.

1. No one tells you about the pain.

Obviously you’re going to have pain when something dislocates. But what about the pain that isn’t caused by a dislocation or subluxation? The pain that is there when you’re laying in your comfy bed and nothing seems to be out of place. But for some reason, your back hurts so bad. Your spine just doesn’t seem to want to act right. The pain that still creeps up on you, even right after you’ve gone to the chiropractor who put everything into place. There is always pain. 24/7, something hurts.

2. No one tells you about the exhaustion.

We have to hold our own bodies together. We can’t just be standing and let our arms hang, it hurts! Every moment of every day, our bodies may not be able to relax. Our spines may not line up correctly when we sit, our knees might twist when we bend our legs. Our muscles might work five times as hard to hold our bodies together, and it gets so tiring. We can wake up after sleeping a nine hour night, and need a nap three hours later. Our bodies are constantly working, and it is so exhausting.

3. No one tells you about the anger.

Constantly being in pain and constantly being tired is so dang frustrating. It’s frustrating that I feel alone. It’s frustrating that people don’t always believe us when we say we’re in pain. On the outside, we may look “healthy.” But on the inside, we may feel like we’re falling apart — both physically and emotionally. It’s frustrating not knowing how to take away the pain. It’s frustrating not being able to live my life like I used to. It’s frustrating not knowing what the future is going to look like. Life with EDS is full of uncertainties, and it’s frustrating not being in control.

It took a little bit, but I’ve come to terms with the fact my life will forever look like this. But a little warning would’ve been nice.

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