The Stigma of Having an Invisible Illness When You're Young
If I ditch the braces and cane, you would never know by looking me up and down that I live every second of every day in pain, and I can’t remember what life is like without it.
• What is Ehlers-Danlos Syndrome?
• What Are Common Ehlers-Danlos Syndrome Symptoms?
You would never know that in this moment it feels like my bones and joints are shattering, and there’s nothing I can do to fix it.
You would never know that I take roughly 20 pills a day in an attempt to manage the side effects of an invisible chronic illness called Ehlers Danlos syndrome(EDS) that is rapidly deteriorating all of my tendons and ligaments, as well as my eyes and digestive track.
You wouldn’t know that choosing to use my cane in public is not an easy choice, even if my pain is severe.
It means ignoring the stares.
It means I will be told by complete strangers, at least once, that I’m “too young” to need it.
It means that someone will likely ask, what is “wrong” with me.
It means the cashier will say they hope I get better soon, but they don’t know that I won’t.
Millions of young adults live with chronic illnesses, and we’re not supposed to talk about it because it makes people uncomfortable.
I’m not supposed to talk about it because I’m only 26 years old — but this is my reality. This is my life.
Most days I am accepting.
Today I’m angry.
Today I can’t stop bursting into tears.
Today I’ve been crawling around the house because I don’t want to deal with the pain of standing and walking until I absolutely have to.
Today I don’t know how I’m going to live like this for the rest of my life.
And that’s OK.
It’s OK to feel all of it.
It’s OK to not be OK.
It’s OK to have days when you don’t give a f*ck.
It’s OK to have days when you’re furious with the universe for dealing you these hands.
And it’s OK to talk about it.
Stigmas don’t ever go away in a world of silence, and suffering in silence doesn’t help anybody, especially not yourself.
Right now, honestly, I’m not sure how I’m going to stand up, but I know I’m not going to stay on the ground.
I’m not going to live in the shadows.
It’s too dark there anyway.
Hello :) My name is Hills and I am 27 years old. I'm non-binary and use they/them pronouns. I am also disabled. I live with Autism Spectrum Disorder, Generalized Anxiety Disorder, Major Depressive Disorder, Complex Post Traumatic Stress Disorder, and am in recovery from Anorexia. Along with my mental health struggles, I have become chronically physically ill over the last couple years. I am still in the process of getting all the answers, but so far I have been diagnosed with Hypermobile Ehlers Danlos Syndrome and POTS. I find strength in writing about my struggles, and I hope to get more of my stories published soon. Stay tuned!
hillarymurphy