ehlers danlos syndrome · Spiritual

Ehlers Danlos – The Syndrome That Kept Everyone Guessing

BY: JANA GREENE

It’s (still) Ehlers Danlos Awareness Month. I thought I would share some interesting things from growing up with it undiagnosed, in letter format, from the prospective of what I know now:

  • Dear Kindergarten-2nd grade teachers: We have been trying to correct the way I hold my pencil for a couple of years now. There’s nothing wrong with my handwriting – I just hold my pencil with pretzel fingers overlapped because that’s what feels natural and comfortable. Please stop trying to make “holding the pencil correctly” happen. It’s never gonna happen.

  • Dear OBs: There’s a reason why I keep going into preterm labor. It’s called “incompetent cervix” and is pretty much what it sounds like. I don’t have enough collagen to stabilize my womb. My babies will come FAST, and with life-threatening complications for me and them. Both of my babies had to be resuscitated at birth and I nearly died, both times. Knowing what was wrong with my body may have helped me have safer pregnancies.

  • Dear PE Teachers (every single last one of you…): I’m not faking the sprains and dislocations. I’m not sure how one would “fake” a dislocation, as you can clearly see my shoulder rolled in an awkward, unnatural position. Nothing like being forced to run the mile on the track when your hip has subluxed out of place! And also….When my mom writes me notes excusing me from PE, it’s because I get injured incredibly easy and I AM IN PAIN. Not “owie” pain….No. We are talking grown-ass man-would-cry PAIN. No, I don’t care about your class, because I dread EVERY morning having to participate in things that hurt me, and hurt me badly. I admit to having a bit of a disdain for PE teachers. Between getting yelled at because of injuries and given “F’s” in class, I’m not a fan.

  • Dear Fitness People: It’s not normal for my heart-rate to go up to 200 on moderate exercise. Being pushed to work harder and go faster is a recipe for disaster. I pass out. Everyone cannot do what you can do.

  • Dear Childhood friends: I cannot hold my fork like you do – it’s not bad manners, I promise. It’s the only way I can keep a grip on my fork.

  • Dear Healthcare workers: Just because you are not familiar with a syndrome or disease doesn’t mean it doesn’t exist or isn’t profound. That is why me – and those like me – are so determined to spread awareness. People don’t know. People need to know.

  • Dear “Every Doctor I saw before I was 40”: Please do not hastily slap the “fibromyalgia” label on every sick person. While it is a very real thing, other illnesses can masquerade for it – conditions that require treatments. It took me almost 20 years to get a correct diagnosis.

EVERY SINGLE THING I experienced health-wise my whole life makes SENSE since the diagnosis. By the time I met Bob, I was at the END of my rope. I wasn’t sure what was happening to me, and half the doctors insinuated I was just crazy, which adds insult to injury. Please, doctors…PLEASE. Listen to your patients and pay attention to the symptoms.

If I still had no idea what was wrong with me, I don’t know where I’d be, ya’ll.

Because after decades of your shit dislocating and experiencing debilitating fatigue and repeated injuries, stroke-level blood pressure, a crappy immune system that refuses to cooperate consistently, horrible migraines that take you down for days…..you lose hope.

I was absolutely losing hope, and honestly, it made me want to drink. I only came out of this thing with sobriety intact because of the love of my good husband and the care of an incredible doctor.

At least I know what’s happening when I sublux or dislocate, or experience high pain. I am so fortunate to know, so that I know how to best deal with my chronic illness.

I wish the same for every person with a chronic illness.

We deserve no less.

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