Humor & Health

My Mystery Diagnosis…I Have Gumby Disease

I am Elastigirl in the flesh. Step right up to my Freak Show of a diagnosis journey

Hands up if you’ve ever had a doctor who didn’t believe there’s something wrong? Hands up if you’ve turned yourself into a mild hypochondriac thanks to the internet? Hands up if you can pull your skin off your bone scaffolding? Ok, I lost some people with that last one.

But I can do that.

My body does a lot of weird things. It has velvety-soft skin. It snaps, crackles and pops more than Rice Krispies. I can bend it like Beckham, and stretch it like Gumby. My elbows and knees can bend backward, I can do prayer hands behind my back and a bunch of other fun party tricks. Including writing on my own skin.

I thought they were just that, party tricks. What I didn’t know was that they were part of a clusterfuck of health problems I’ve been having, ranging from chronic fatigue to widespread pain. Pain that ranges from feeling like my body has been worked over with a meat tenderizer, to feeling like I’ve been strung up on a medieval rack.

There have been a string of doctors who half-assed their way through trying to diagnose me. Ranging from primary care doctors and ER doctors to a rheumatologist and then a hematologist. I called the hematologist the ‘head vampire’ as he was the last one to use me as a human pincushion like I’m Pinhead from Hellraiser. And I got…bupkis.

None of them believed me.

My last primary care doctor legit thought I was nuts, and his ‘help’ was recommending a self-help book, Unfu*k Yourself: Get Out of Your Head and Into Your Life. Quietly to myself (because I’m sure there’s already a note about being coocoo for cocoa puffs in my chart already), I replied in kind…without the prefix ‘un’.

The only doc who didn’t think I was nuttier than a squirrel turd was ironically, a psychiatrist.

But I have a new doctor now. She’s awesome. However, I still had to figure this shiznit out on my own. And sadly, I did it by watching a YouTube video.

Am I one of those people who watch a YouTube video and think I have that disease? Well, yeah. The internet has turned many of us into hypochondriacs. But…you’re not a nutbar if it’s true.

Am I going to believe an internet doctor (he’s a real doctor too) just because he’s Zoolander-level ridiculously good-looking? No, so I went to the Ehlers Danlos Syndrome website for stretchy sonnamabitches and found their checklist. I was able to check off so many boxes of the weirdest symptoms you can imagine, like arachnodactyly, that I asked my new doctor about it.

I am so profoundly glad that I didn’t give up (and I came damn close) and kept advocating for myself. I brought the checklist for circus freaks to Dr. Awesome and I swear she nerded out with me on it. She’s a new doctor and I think she was just excited to catch ‘a weird one’. Most importantly though, she believes me.

She’s sending me for genetic testing, where I will find out which brand of mutant I am (there are 13 known types so far). I had an EKG done, and next week go for an hour-long heart test with a fancy-schmancy name I can’t remember (who names these friggin’ things?). Those will be my official ticket to the freak show.

But considering I lit up the checklist like a Christmas tree, Doc McAwesomePants seems fairly confident that I’ve finally found what’s wrong with me. A condition that I’ve likely had my entire life.

So, it’s been 40 years in the making. Sadly, for people with Ehlers Danlos this isn’t uncommon. The average time to diagnosis is 10–12 years.

If you’re thinking — I can do some of these things above! I’m part of the Gumby cool-kids club too. No? Just my mind does that? Well, you might fall into the 3% to 20% of people with some sort of hypermobility. People with EDS however, represent an estimated 1 in 5,000 people.

Don’t worry though, the club isn’t cool. Be happy that you’re only in the 3–20% of people who can audition to be in the live-action remake of The Incredibles. EDS isn’t just being soft n’ stretchy, it’s also chronic pain, extreme fatigue, heart issues, vision problems and more.

EDS in a nutshell is a mixed connective tissue disorder affecting collagen. This means that instead of being held together with superglue, you’re held together with chewing gum. And that shit doesn’t hold.

Cool Story Bro — But What’s In It For Me?

Since statistically, only 1 in 5,000 people reading this will be fellow Gumbians, you might be wondering…‘Cool, but uh, what’s in this for us?’ Well, a lot of us will have health issues in our lives, physical and/or mental. And the road to treatment isn’t always easy.

There are a couple of lessons I wanted to share from my experience. The first is that sick or disabled people don’t always ‘look sick or disabled’. Even doctors can be blind to this. I look so healthy that a nurse taking my weight asked me how much I work out because I look ‘fit’. But some days I can’t even physically get through the day.

Another lesson I’ve learned is that, like people in general…some doctors suck. They’re also, despite what some of them say, human. Sometimes you need to push back. You need to advocate for yourself. This is your health.

I’d love to say that I never gave up fighting for a diagnosis, but I came really close. More than once. The fight can be draining (even more draining than even a blood-sucking vampire hematologist). I was lucky to have my mom, who helps me advocate for myself — by bringing her special brand of ‘fuck-around-and-find-out’ bitchery — when I’m losing the battle (either with doctors, or myself).

Ask a loved one (ideally a loving, pushy bitch) to help you advocate if you need it. I wish I could say that’s what I did, but I didn’t. I’m just lucky my mom is a pushy bitch. I didn’t ask her for help, because I didn’t want to ‘bother her’. But as Mom indignantly put it, “I’ll damn well decide what ‘bothers ME’ thank you very much.”

We all need help at some point. You’re not ‘stronger’ by not asking for, or taking, help; you’re stronger with help.

~Robin Wilding, reporting from…a circus tent with a sword-swallower, lion tamer and mustache’d lady (oh wait, that last one is me).