At 16, I Was Diagnosed With EDS And It Changed My Life Forever
It has changed everything.
For as long as I can remember, I have suffered from chronic pain, injuries for seemingly no reason, and hypermobility. After 16 years of not knowing what was happening to me or why and countless trips to doctors in an effort to finally find answers, I was diagnosed with Ehlers-Danlos Syndrome.
Ehlers-Danlos Syndrome (or EDS) is a disorder affecting the collagen in your body causing it to be looser and more fragile than that of people without the genetic marker. Though it has been a few years since I was diagnosed and I have had plenty of time to adjust to life with a diagnosis, the things that most people don't know are still present in both my life and others who suffer from invisible illness.
Imagine this: it's 9 a.m., your alarm has just gone off and the sun is peeking through your window. Everything seems fine... until you stand up, that is. The moment your feet hit the floor you're overtaken with dizziness and pain, a feeling most people will never experience. That's what waking up with an invisible illness is like, not to say waking up is an easy task for everyone, but something so simple can truly take so much out of you when your body is working against you.
Now, despite such an unpleasant first feeling, life still happens around us. We drag ourselves out of bed and get ready for the day, pushing through the pain just to get through work or school. We still strive to be the best that we can be and will do as much as we can to accomplish that, we just have a few extra barriers blocking our paths.
Explaining invisible illness to those who don't understand is nearly as difficult as getting through the day. If I had a quarter for every time I've heard the words "But you don't look sick." after telling somebody I am, I would be rich. Illness does not have to be externally visible to be present, and that is the most important thing to recognize.
Often times, it takes multiple explanations, Google searches for visuals and trying to make your illness physically obvious for people to understand that you truly mean it when you say you can't carry that box of stuff for work or sit in the front of the room. Having to explain what you're feeling over and over again without success can be pretty taxing and sometimes even invalidating.
Something many people with invisible or chronic illness have taken to using as a metaphor for what life is like for us is the Spoon Theory. The easiest way to explain this theory is to imagine that every day you are given 12 spoons (less if you've been sick or have forgotten to take your medication) and for every activity you participate in, you have to turn in a given amount of spoons. Something simple, like brushing your teeth, would cost one spoon. The harder or more involved the task, the more spoons you have to give up. This theory is a perfect representation of life with chronic/invisible illness and truly helps those around us to understand what we feel daily.
