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My Chronic Illnesses Make Me a 'Reasonably Sucky Superhero'

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Like all X-Men, I have a back story. I have genetic mutations that make me special, but I can’t freeze things, I’m not part wolf, I don’t have laser sight and I can’t fly. I use a wheelchair, but unlike Professor X, it’s controlled by a joystick and not my mind, although recently I’m starting to resemble him in the hair department.

• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?

Holly Billinghurst

I spent my formative years chasing letters after my name. In fact, I’d just started looking at the final frontier of a Ph.D. when a whole different set of acronyms arrived in my life. My medical diagnoses are a series of strange acronyms that most people have never come across:

Ehlers-Danlos syndrome (EDS): This genetic mutation of collagen makes me the Z-list of X-Men. My connective tissues, such as ligaments, tendons, muscles and internal organs, stretch further than they should and forget to stretch back, causing daily joint dislocations or subluxations (partial dislocations) and the slowing of gastric transit as stretchy insides means…yeah, ew.

Imagine Plastic Man’s ability to stretch just without his ability to stretch back. Every dislocation makes a joint a little more loose and more liable to pop out again. An adult has 206 bones, give or take adult bone fusions, which gives me 250-300 joints to play with daily.

My skin likes to get in on this action by being velvety soft but ultimately tearing or bruising at the slightest thing. There are times and places where this is not welcome! It’s like being the anti-Deadpool; I have beautiful skin and zero ability to heal.

Postural orthostatic tachycardia syndrome (POTS): This neurological disorder affects my autonomic system, which controls things like my heart rate, digestion and body temperature. POTS means my heart rate rises 30 beats or within the first 10 minutes of standing, according to Dysautonomia International. The result of this is a lack of oxygen to the brain and ultimately fainting. This isn’t fun when you’re the teacher and you wake up to a class of frightened children. This happened twice this term. My teaching days are numbered.

POTS also comes with heat, exercise and often food intolerance. Any of these can make symptoms of palpitations, dizziness and nausea worse. This means my archnemesis is a hot bath or shower.

Complex regional pain syndrome (CRPS): My CRPS flares are focused around my pelvis, and at their worst, feel like those laser eyes I don’t have are inside me and burning my bones. White hot lightning goes down my legs, and I flip from begging my husband to massage them to not being able to bear him breathing on my skin. The only thing that gets me through a real flare is a transcutaneous electrical nerve stimulation (TENS) machine on a permanent low buzz.

So as mutants go, I’m a reasonably sucky superhero. But despite — or perhaps because of — all this chronic pain, I’m much tougher than I look. Alongside my husband, who’s also my carer, I’m carving out a new life for myself by developing an app for people with similar chronic conditions called Expect Zebras.

A friend of mine said I’m like the comic book character Oracle, who used to be Batgirl. She doesn’t let her disability have an impact on her new life as a top programmer and hacker. I like her style. She looks like a woman with a TENS machine and a lot of focused frustration.

I’m not Batgirl anymore.

Follow this journey on The Hippy Geek.

Originally published: March 28, 2016
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