8 Ways Ehlers-Danlos Syndrome Makes Me a Superhero


Most people are surprised to learn I’m an Ehlers-Danlos syndrome (EDS) superhero. I look fine on the outside, but underneath my unassuming exterior of hoodies and glasses is the powerful flowing cape of EDS, a rare genetic disorder that causes defective collagen.

Because collagen is present in every cell of the body, this leads to many serious and seemingly unrelated health problems. So it’s true that exhaustion, pain, and brain fog often overwhelm me and tie me to the couch. But when I emerge from the fog, I find I have the ability to transmute the energy of the forces of evil for my own purposes.

1. I have X-ray vision.

My X-ray vision makes staircases and teacups and dinner plates glow with radioactive danger. Cups with small handles bend my finger joints sideways, neutralizing the comfort-giving properties of a hot drink. A dinner plate subluxates my wrist if I carry it with one hand, leaving me a real mess to clean up. And stairs, of course, are for falling.

I see the treachery of mundane objects. And yet, this X-ray vision refreshes my creative energy. I have a slightly askew, rag-doll perspective, and my surprise at what I see motivates me to communicate my findings. Seeing things differently enriches my writing, my compassion, and my self-knowledge. In other words, my X-ray vision fills me with infinite glowing ideas, turning me into a creative mastermind.

2. Stairs are my nemesis.

I’ve lost count of my battle scars and my joint-failing tumbles from my nemesis. But because stairs and I confront each other regularly, my battle skills of mindfulness, energy conservation, and a slightly disjointed sense of humor, are sharp. If I take enough steps back from that staircase, I might even see the slapstick absurdity of seemingly random floppy flailing.

Because I know my nemesis intimately, a staircase never sneaks up on me. I gain strength in every vulnerable climb or descent, because each is an opportunity for courage. I see you, staircases. Bring it on.

3. I have an invisibility cape.

People say invisible illness needs to be exposed and recognized and, yes, it can be lonely and infuriating to be invalidated for “not looking sick.” Like everyone, I want recognition and acceptance. However. Let’s not forget that invisibility is a superpower. Superheroes protect their power by living their daily lives in relative anonymity.

Invisibility sometimes protects me from others’ insidious assumptions and expectations. If people knew I was an EDS superhero, I might be asked to save the world more often. Or be treated as if my illness were the only noteworthy thing about me.

But invisible, I sneak behind the scenes. I’m protected from discrimination. The strength in invisibility is that no one can keep me from creating the life I want for myself. My invisible cape keeps me safe from my enemies, and I get to choose when to expose information about my superpowers.

4. I have highly developed spidey senses.

My spidey senses work their long legs into both my external and internal worlds, and this sensitivity is not a liability. I have to be miserly with my limited energy, so my intuition about new people and situations is strong. If I feel energized, I move forward; if I feel a ripple of fatigue, I pull back. I get to direct all of my radiant energy beams towards the people and activities I feel passionate about.

My spidey senses also work within my body to let me know immediately if I’m off my well-fed and well-rested track. One skipped meal could throw me off for days, putting me at risk for a tired misstep and an injury that leaves me out of commission for a month. Many unfortunate mortals can neglect their bodies and feel awful for years or even decades before developing chronic health problems. But as an EDS superhero, I have to go through my days feeling as well as possible. My spidey senses give me immediate returns on my well-being.

5. I never age.

Because of everything I’ve been through and my severe chronic pain, sometimes I feel like a decrepit vampire who’s lived for centuries. But my stretchy skin keeps my face unwrinkled, so I look about the same at 35 as I did at 20. I always get carded, and I used to hate it when people sharply underestimated my age. But I’ve learned to transmute the energy of my irritation into strategic intrigue.

Even though I’m a quiet one, which can intimidates people, looking younger than I am can also be disarming. Ego battles with my peers are few and far between, which means I don’t waste my energy on petty competition. And I never fail to surprise people when I reveal my secret skills and knowledge. It seems suitable that I’m quietly compelling. I am a superhero, after all.

6. I’m extra floppy.

In the early 20th century I could have been a sideshow performer stretching myself into a salted pretzel for entertainment. But that hurts, so I’ve undergone intense superhero proprioperception training, through physical therapy, to be able to maintain my posture and alignment.

However, my triple-jointed floppiness potential may save my life yet, such as if I have to squeeze through a too-small window to escape from a serial killer. I’m holding this power in my back pocket just in case.

7. I have an automatic friend filter.

Sometimes I have to cancel plans. This is almost never about the plans themselves but about listening to my body’s spidey senses. In bad pain moments, which are unpredictable, standing on concrete for two hours might cost me two days of recuperation time. So I’m very careful.

Lucky for me, new friends who are offended and/or judgmental in response to my cautious planning get filtered out of my life. As a consequence, the only people left around me are good ones. I wouldn’t change that for anything.

8. I can stop time.

I don’t work a full-time job with regular hours. While I do have to make ends meet, as my own boss I can stop time to take half days, full days, or full weeks off without notice. These vacations aren’t high-energy excursions to tropical beaches halfway around the world, mind you. My “pain vacations” are usually unplanned afternoons in the bathtub.

But because I have full, time-stopping control over my daily grind, I enjoy my work more. I’d choose this over fancy paid vacations any day.

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Thinkstock Image By: SergeyNivens

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