Misconceptions I Have Heard about EDS
There are plenty of misconceptions about Ehlers Danlos Syndrome, a genetic connective tissue disorder that creates faulty collagen, causing dysfunction of most systems of the body. Because our bodies function differently than non-EDS bodies, we are very misunderstood, not only by strangers and sometimes loved ones, but most notably by the medical community. Below is a list of misconceptions that I have heard as a person with EDS.
“It’s just growing pains.”
The growing pains that we feel are actually due to microinjuries caused by unstable joints. Muscle cramps, peripheral neuropathy, and swelling all cause abnormal pain.
“You’re just faking this for attention.”
I promise you, EDSers experiences are REAL. They may not make sense when compared to normal connective tissue, but there are biological and biomechanical reasons for our dysfunction.
“You’d feel so much better if you lost weight.”
Subluxations and dislocations hurt at any size, and POTS doesn’t discriminate. Our weight is often outside of our control, high or low. Just let us live our lives without the added stress of body shame.
“You should eat something!”
Many of us have comorbid conditions, like MCAS or gastroparesis that restrict our ability to get adequate nutrition. We can handle our own diets, thank you very much.
“You’re just lazy. Everyone gets tired.”
The fatigue experienced by the EDS community is not normal. It is the result of muscles working overtime to hold us together.
“You’re so clumsy! What a clutz.”
EDSers lack proprioception required to feel our bodies in space. Our stretchy ligaments don’t provide us with proper feedback, and our nerves don’t function the same as non-EDSers.
“You’re so embarrassing! Don’t do that.”
Disability isn’t embarrassing, or at least it shouldn’t be. We deserve to live life in public, wearing our compressionwear and braces, or using our mobility aides and showing our medical equipment PROUDLY!
“I bet you don’t even have _______.”
Questioning a person’s diagnosis, that typically goes undiscovered for many years or decades, is incredibly invalidating. Just because a person doesn’t fit an expectation of what a particular condition “looks like,” doesn’t mean they do not meet other diagnostic criteria.
“You shouldn’t be a parent. That poor kid.”
The choice to have children is between a person and their medical team. Everyone deserves to know the love of a family. It’s also none of your business.
“You just have a low pain tolerance.”
On the contrary, EDSers live with a level of pain most couldn’t even imagine, and don’t metabolize pain medications the way non-EDSers do. We’re some of the toughest people you’ll ever meet!
“You can’t be hypermobile because ________”
We are a diverse community of people, and every EDSer has a different set and severity of symptoms. AND hEDS has no genetic marker, so it is diagnosed clinically. If you’re not a geneticist, sit this one out.
“Lots of people have _____, and they don’t need _____.”
EVERY case of EDS is different, and what one person needs will be different from many others. Our specialized teams of doctors look at our individual needs and come up with a plan.
“You should do this thing I heard about to strengthen, I bet it would work for you!”
Trust me, we have tried it all! Our tissues are fragile, and we can be injured by very basic movements or exercise programs. Our specialist PTs have a plan for us. We’ve got this covered.
“You’re just not trying hard enough.”
That’s funny...
What misconceptions have you encountered as a person with EDS?
