Five Superpowers of Those Living with EDS

With Ehlers-Danlos syndromes comes five superpowers.

Superpowers are found in superheroes and Olympic athletes, but not in people like me. I am disabled.

To be frank, I can barely fathom doing half the things an able-bodied person can do — let alone possess superpowers.

Just twisting my neck to look at a bird flying by can cause subluxation of my spine, or getting emotional due to some unwanted and unexpected stress can send me into a life-threatening allergic reaction. Let me tell you, these are not superpowers, I promise you.

My disabilities include, but are not limited to, EDS (Ehlers Danlos syndrome), MCAS (mast cell activation disorder), dysautonomia, POTS, PTSD and a plethora of other unwanted genetic mishaps that could make me winded if I typed them all out.

Over the years I kept my disability secret partially due to shame but also because I could not name it. How can I be disabled if I verbally can’t articulate what that disability is?

I would tell myself – no one believes me anyhow. Every doctor over the 18 years of seeking answers in just about every field of medicine (cardiologists, gastrologist, psychologists, gynecologists, dermatologists, etc.) concluded quickly that my issues were all a figment of my imagination or a manifestation of mental illness.

The diseases that I have affect every major organ and system in my body, so doctors would point fingers at each other and no one wanted to work together to figure it out.

It is not uncommon for people with EDS to go decades with little to no support or treatment — and even after finally getting diagnosed, treatment is limited, which brings me to superpower number one.

Ehlers-Danlos syndrome: a group of inherited disorders affecting a person’s connective tissues — primarily their skin, joints and blood vessel walls. Connective tissue is a complex blend of proteins along with other substances that provide elasticity and strength to the underlying structures in one’s body.

Superpower 1: Believing in Yourself When the Whole World Abandons You

Superpower number one is the ability to believe in yourself when no one else will. Most of us who’ve struggled with EDS or any other illness that went undiagnosed for months, years\, or decades know the ropes of looking for answers and stumbling across false hope, then exclaiming “this must be it.”

I can’t tell you how many times I made certain changes in my life or tried something new like acupuncture to then experience some improvement that gave me enough (false) hope to call five people and tell them I found the answer to what ails me.

Perhaps those calls came prematurely and I did not give myself enough time to see the truth, but darn it — I was ready for the answer!

I wanted so badly for anything to just be the magical answer to all my issues, and I felt if I spoke it, perhaps it would come true.

Maybe the people around me would stop thinking I was neurotic and I could stop feeling like such a burden.

As the medical community rejected and gaslit me, family and friends started to question my sanity; I had only myself to believe.

I knew something was very wrong and I was not going to let anyone else tell me differently.

Although there were times, I did question my own sanity (who wouldn’t) I always came back to knowing in my core that I believed in myself.

I hope you will keep believing in yourself too.

Believing in yourself is a superpower, especially when everyone else has left you in the dark. Never giving up when you are out there all alone fighting a battle others don’t understand is hard; I believe in you.

Superpower 2: Adaptability to an Able-bodied World that Does not Understand You

As human beings we all must adapt; that is just a part of everyday life. Those of us with disabilities have had to learn adaptability at a whole new level and that skill becomes a superpower.

Do you need help getting out of some random or strange sticky situation? Ask a person with a disability to help you come up with an answer.

We spend half of our lives trying to figure out how we best fit and can function in a world that is not very accommodating to us.

We take adaptability seriously because we have to and no one else will. Besides, half the time we are not even consciously trying to adapt; it just becomes innate in how we navigate the able-bodied world.

Those of us with EDS have bodies that we can’t count on, so adaptability helps us stay alive and functioning.

We have learned to ask to lie down in strange places when our cranial instability causes our nervous system to go haywire and we can’t hold up our heads anymore.

We have learned to brace our joints to prevent permanent injuries from something as little as taking a short walk.

We have learned to ask to not be hugged too hard, or the people we love could dislocate one or many of out ribs.

We have also learned to adapt in silence as the world around us shifts and moves with normalcy.

We have learned to weather the loss of what we can see from others and normalcy that we will never attain.

We must stop thinking of ourselves as broken or a burden and learn to truly love ourselves.

Adaptability is a superpower that we need to survive, and we do it with grace and we adapt like we have a PhD in it.

Superpower 3: A Deep Understanding of Life’s Impermanence and How Precious Every Moment of Life Is

Life is short and that sounds cliché because we have heard that saying a million times, but do most people take it seriously? Not often.

Those with EDS are acutely aware of their mortality and have found ways to try to live their best life.

Death always seems to be knocking on someone’s door nearby and it is hard not to notice.

Hospitals are a place that we often frequent and it starts to cause trauma. No one wants to go to the hospital over and over again and have the people who are supposed to help cast you off like a leaf in the wind.

Being brushed aside by those you rely on to help is traumatizing.

In this, we learn to value every good moment, every person we love and everything that brings us joy — like spending time with a good friend.

It is that common experience you have watched in movies. Someone almost dies, has the wake-up call and learns to appreciate the little things in life.

You witness the movie’s main character taking time to watch and take in a sunset.

Their appreciation moves you.

This is our lives on a daily basis.

We are moved by the most stupid, most brilliant things!

We know the impermanence of the world well.

Superpower 4: Empathy for the World and the Suffering of All Living Things

Empathy is great; we all should have a little of that in our lives. It helps us better understand the world and makes us less selfish human beings.

Being able to understand and be compassionate about another person’s pain or challenges is a beautiful gift.

Those of us with EDS know what it means to struggle. We are tested physically, psychologically, emotionally and mentally at some level every day.

Some days can be so dark it’s like we are drowning in the deep black nothingness of our illness.

These deep dark places we have traveled to have helped build beautiful human beings with the ability to behold empathy for other human beings in the most superhuman way.

Having empathy is a superpower. Having super-empathy is a super-superpower. We feel you. We get you. We care more than most because we know what it’s like when most don’t care.

Superpower 5: Hypervigilance Offers Excellent Awareness

Hypervigilance shows up so often that it has become like an extra appendage. When all the other appendages are spoken for, hypervigilance is there with a special skillset to help out.

So many of us with disabilities have a whole toolbox of them ready to go build something from nothing once again — because we can!

Hypervigilance is a unique tool in how it is so diverse. You become hyper-aware of your body but also your environment at any given moment.

What this does is literally offer “Spidey-senses” to quickly assess, calculate and execute a call to action quicker than most.

It makes you good at brainstorming because of the need to evaluate options.

Hypervigilance also helps you see those tiny issues that no one else can figure out — and always in the nick of time.

Conclusion

The beautiful thing about those with EDS and other life-altering disabilities or chronic illnesses is that we have superpowers that we don’t even realize.

We are beautiful human beings with compassion, empathy, and MacGyver-like adaptabilities.

If we can believe in ourselves when no one else will, we will believe in you with so much enthusiasm that you will believe you are made of pure magic.

It’s not easy living with EDS or any other debilitating condition, but we’re resilient, strong and determined and so much more.

And, for those of you sharing your lives with us, we might even share some of our superpowers with you — if you’re lucky!