What It's Like Living As A Spoonie
Start writing a post
Health and Wellness

At 16, I Was Diagnosed With EDS And It Changed My Life Forever

It has changed everything.

2775
Libby Tillander
Photo by Sarah Tillander

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.

Report this Content
This article has not been reviewed by Odyssey HQ and solely reflects the ideas and opinions of the creator.
​a woman sitting at a table having a coffee
nappy.co

I can't say "thank you" enough to express how grateful I am for you coming into my life. You have made such a huge impact on my life. I would not be the person I am today without you and I know that you will keep inspiring me to become an even better version of myself.

Keep Reading...Show less
Student Life

Waitlisted for a College Class? Here's What to Do!

Dealing with the inevitable realities of college life.

67782
college students waiting in a long line in the hallway
StableDiffusion

Course registration at college can be a big hassle and is almost never talked about. Classes you want to take fill up before you get a chance to register. You might change your mind about a class you want to take and must struggle to find another class to fit in the same time period. You also have to make sure no classes clash by time. Like I said, it's a big hassle.

This semester, I was waitlisted for two classes. Most people in this situation, especially first years, freak out because they don't know what to do. Here is what you should do when this happens.

Keep Reading...Show less
a man and a woman sitting on the beach in front of the sunset

Whether you met your new love interest online, through mutual friends, or another way entirely, you'll definitely want to know what you're getting into. I mean, really, what's the point in entering a relationship with someone if you don't know whether or not you're compatible on a very basic level?

Consider these 21 questions to ask in the talking stage when getting to know that new guy or girl you just started talking to:

Keep Reading...Show less
Lifestyle

Challah vs. Easter Bread: A Delicious Dilemma

Is there really such a difference in Challah bread or Easter Bread?

43516
loaves of challah and easter bread stacked up aside each other, an abundance of food in baskets
StableDiffusion

Ever since I could remember, it was a treat to receive Easter Bread made by my grandmother. We would only have it once a year and the wait was excruciating. Now that my grandmother has gotten older, she has stopped baking a lot of her recipes that require a lot of hand usage--her traditional Italian baking means no machines. So for the past few years, I have missed enjoying my Easter Bread.

Keep Reading...Show less
Adulting

Unlocking Lake People's Secrets: 15 Must-Knows!

There's no other place you'd rather be in the summer.

968478
Group of joyful friends sitting in a boat
Haley Harvey

The people that spend their summers at the lake are a unique group of people.

Whether you grew up going to the lake, have only recently started going, or have only been once or twice, you know it takes a certain kind of person to be a lake person. To the long-time lake people, the lake holds a special place in your heart, no matter how dirty the water may look.

Keep Reading...Show less

Subscribe to Our Newsletter

Facebook Comments