A few months ago, I started dating someone with Ehlers-Danlos syndrome. Sometime after that, he noticed the fact that my elbows bend backward and started asking me seemingly innocent questions. A few weeks and two doctors appointments after that, and it's looking more and more likely I have a subset of EDS known as hypermobility. More importantly to me, it means that the constant aches I've had for as long as I can remember are NOT, in fact, "normal" but a symptom of my connective tissues not functioning correctly.

Other symptoms of EDS and hypermobility include chronic fatigue, digestive issues, disrupted sleep, "clicking" joints, poor circulation, and soft/stretchy skin. All of which I have. I went through the first 19 years of my life thinking it was normal to be constantly achy and tired.

I thought I had it worse than "average" in some ways, sure, but I thought it was my own fault i.e. binding/sleeping on my arm weird. When my ankles felt like they were being stabbed when I stood or walked for too long, I blamed it on being out of shape and did my best to keep my mouth shut. I remember reading those "humans can walk for 5 miles a day" articles about how ancient humans would track pray until they collapsed from exhaustion and thinking "damn I must be HELLA out of shape".

My brain keeps recalling all the horrible "growing pains" I'd get as a child that would reduce me to tears because my joints felt like they were being ripped apart. And how my parents would tell me to tough it out because it can't be that bad. And I continued thinking I was just "sensitive". I think of how my dad used to put my legs behind my head as a kid and yell "taco baby!" and how I was/am weirdly flexible without ever really stretching. How my fingers and elbows bend the wrong way. How if I take hot showers my legs turn red and purple from the blood flow.

I'm pissed at myself for ignoring all the symptoms as much as I'm pissed at my parents for ignoring the symptoms I TOLD them about. It's not normal for a kid to cry at the thought of walking or get stomachaches every day for no discernable reason. When I was diagnosed with depression (and more) of these things were explained away as psychosomatic. But they didn't magically appear when I got depressed. When I was 8 and loved life and school and sports I would still try to get out of soccer practice because I hurt so badly.

And what REALLY sucks is that there's very little research into hypermobility and EDS and very little awareness of it. Most kids have some hypermobile tendencies (they're bendy) but they grow out of it. The problem lies in the kids who don't.

Really, the problem lies in the people who don't know WTF hypermobility or EDS is. So if you have the symptoms I listed above, talk to your doctor. Google some things. (Don't jump to conclusions, though. Get professionally diagnosed.) Currently, I've had two doctors and my partner (who has rather severe EDS) tell me it's very likely I at least have hypermobility. But if I get diagnosed, there's not much they can do. The treatment is pain management and preventative measures. No more impact sports (this includes running), always wear shoes that support the ankle, get special mattresses, wear joint braces, don't hyperextend your joints (stretching ), maybe there are some exercises that can help strengthen the joints.

Thankfully it's likely whatever I have isn't severe. For some people with EDS, their joints are so unstable they can't walk, and they end up in a wheelchair. Maybe sooner, maybe later, but it's accepted as an inevitability. My partner is one of those people. The doctors said he'd end up in a wheelchair by age 20. At age 20, they told him it would be 25. He's now 24 and still walking on his own, though some days he needs mobility aids like canes or crutches. On particularly bad days he can't get out of bed because his legs won't support him.

Here's his recount of what led to him being diagnosed;

"My kneecap had slipped to the side and locked my leg straight. The muscle that's meant to control the movement of the kneecap had atrophied to the point my bad leg was nearly 2 inches narrower at the knee than the other. So basically I couldn't walk, it'd get slightly better in summer [heat helps] but every autumn/winter I would go back to the doctors and complain. Thing is I had depression and asthma so they figured I was faking it to get out of sports."

His doctors wouldn't even write him a note to get out of PE. His gym teacher, seeing that he COULDN'T STAND OR SIT WITHOUT HELP just told him not to bother. The GYM TEACHER was more responsible than the MEDICAL PROFESSIONALS.

I'm still processing these revelations myself. It took a few weeks of my partner pointing out symptoms for me to accept there might be something wrong, a few more to actually talk to a doctor about it, and even more to actually ask (yet another) doctor for a referral.

When I first brought up the symptoms, the doctor gave me a skeptical look and told me that they were likely psychosomatic symptoms and not due to a physical ailment. Which was fair, given that .2 seconds earlier I'd asked for advice on finding therapists. But I had come too far to be cowed into once again doubting myself, so I resolutely locked eyes with the doctor and stuck out my arm, bending it backward so my elbow concaved.

She glanced at my arm, blinked, and said "Make an appointment to see a rheumatologist. As soon as possible." My backup plan was showing her that my fingers did the same, my knuckles popping entirely out of joint, and that I could rotate my hand and arm 360 degrees.

I'll keep you all updated (not that anyone asked) but in the meantime, you can read more about EDS/hypermobility (and the symptoms) here. Be aware that there are many different types. Some even affect the heart functions so if you have joint pain, bruise easily, are "flexible" or double jointed, have stretchy skin, chronic fatigue, or a history of dislocating joints, TALK TO YOUR DOCTOR. Worst case scenario, you're a bit overcautious and waste some time having your knees poked. Best case scenario? It saves your life.