If you catch a glance in the library or lecture hall, chances are you wouldn’t see anything different.
I look like any other 20-something college girl, complete with black leggings and a Starbucks cup. If you looked closer, you might begin to notice some subtle differences. I’m almost always in a black or turquoise sweatshirt, even in 80-degree weather, like someone who fervently reps their favorite sports team.
You might notice me digging through a backpack stocked with a giant Gatorade bottle (always glacier freeze), a protein shake, snack bars, biofreeze, KT tape, and a baggie of different pills. While it sounds like it, I’m not a sports-playing, pill-popping college kid wearing the wrong school colors. The backpack is filled with supplies I need to make it through four hours of classes. Gatorade for electrolytes, protein shakes for blood sugar, KT tape for joints, pills for pain and allergic reactions, and sweatshirts for temperature control. I wear black and turquoise because I’m proud of what they represent. They’re my colors. Like anyone who wears their Yankees hat or Binghamton lacrosse jacket with pride, I wear my disability awareness attire proudly.
I’m someone who lives with invisible illnesses. I have three major conditions that impact my daily life. I’m constantly tired and in pain. I will likely live with them the rest of my life. Here's a quick FAQ: Yes, they're real. No, I'm not faking it. Yes, I've tried *insert suggestion here*. No, you can't "catch" them. However, listening to me rant and rave isn't the point here. My symptoms, specific conditions and prognosis don’t matter. The important thing to know is that I wear my disabilities with pride. I don’t shy away from the word “disabled”. I’m not scared or embarrassed of it. I'll happily talk about them if someone asks. I sport my awareness gear like people wear their favorite team’s logos. My laptop has stickers of a zebra, a spoon, a tachy EKG, and a glacier freeze Gatorade bottle plastered on the front. (If you have EDS, POTS or a chronic illness, you might get why.) I share articles, had a chronic illness blog and probably drive people crazy with talking about it.
I wave my disability flag high for everyone to see because, at one point, I was ashamed of it. I was terrified that someone would find out I was sick. I thought no one would understand. I was wary of everyone because I was worried they would think I’m faking my symptoms. That I made it up or was using it for attention. I don't "look" disabled (whatever that means) so I assumed no one would believe that I was. I didn’t go out because I didn’t want to have an episode in public or cause a scene. I would make up excuses to get out of plans. “My mom said I can’t, sorry!” was a favorite of mine. I wouldn't use my handicap parking even on "pain scale 8" days because I didn't want someone to think I was borrowing my grandma's or stole it from the neighbor. I felt isolated, angry and scared. The turnaround came when I met other people with my conditions. People who had more severe cases, less support, more struggles and fewer resources than I did. They were resilient, brave and proud. Seeing them continue to fight and be proud of what they had been through helped me to do the same.
My conditions have molded me into the person I am today. I wouldn’t be strong or resilient like I am today without them. Being disabled has taught me what really matters in life. I have stronger relationships and don’t take things for granted. My disabilities have taught me lessons I wouldn’t have learned otherwise. I have met wonderful people and made lifelong friends. I’ve learned that I can get through anything because I’ve already been through something incredibly difficult. Of course, I still have bad days. I get angry, annoyed and frustrated. I’ve spent many nights crying because I’m so angry at whatever caused this happen, whether it be God, genetics or luck. Then I remember how lucky I was to have been diagnosed early on, to have supportive family and friends and to have the resources to manage my conditions. I remember that without this, I wouldn’t be who I am today. My disabilities are as much a part of me as my brown eyes, my poor coordination and stubborn attitude. I would love for them to disappear but since that’s not happening, I might as well embrace them. I can use my experiences to raise awareness, advocate for the disabled community and work toward finding better treatments and cures. You have to play the cards you’re dealt and that’s what I’m doing. My hand may not be as good as someone else's but you can bet that I’m making the best of it.
For more information on my specific conditions, chronic illnesses in general, and how you can get involved and help raise awareness, check out:
http://www.dysautonomiainternational.org/
https://www.ehlers-danlos.com/
