Growing up with an invisible illness isn’t easy. Those fighting them hear the invalidating words, "but you don't look sick" more times than they can count, but looking healthy and being healthy aren’t the same thing. Cassidy DeMona is all too familiar with that concept; that’s why she founded Invisible No More, a nonprofit dedicated to raising awareness of and increasing funding for the research of illnesses that don’t make themselves known outwardly. Invisible No More uses social media to connect warriors with others fighting similar battles, to inform others about what it means to have an invisible illness, and to send care packages to those who are fighting them. Cassidy is fighting to raise awareness and hope for people like her, and to make sure that nobody ever hears the phrase "but you don't look sick" ever again.
What inspired you to create your non-profit organization, Invisible No More?
I was born with a rare genetic disorder called Ehlers-Danlos Syndrome (EDS). EDS affects connective tissues, which make up and support the skin, bones, blood vessels, heart, stomach, and many other organs. In easy terms, it means that a lot of the tissues in the body are too loose and stretchy to do their job. Ehlers-Danlos affects every body system we have, and causes very bad muscle and joint pain.
Even though I was born with Ehlers-Danlos Syndrome, I wasn’t diagnosed until I was 16 years old. The disorder is very rare, and often doesn’t cause severe problems until adolescence. I began developing serious symptoms in middle school and spent years visiting doctors and staying in hospitals. The biggest struggle was not the symptoms or the treatments I endured, but rather the judgement I faced because I “don’t look sick.” Ehlers-Danlos Syndrome is considered an “invisible illness,” because those who have it don’t show any signs of being ill from just looking at them. Things like arthritis, diabetes, and many forms of cancer are also invisible illnesses, and affect millions of people across the world. People at school often didn’t understand why I had to sit out of gym class, or why I missed a lot of school. When I explained I had a disorder, many didn’t believe me because I looked normal on the outside.
This stigma affects so many people with invisible illnesses, especially kids and teenagers! I decided that I needed to do something about this to help other people fighting invisible illnesses. I started Invisible No More in 2015, with the goal of changing the way the world views invisible illnesses and pediatric cancers by spreading awareness of different conditions and sending support to those fighting them.
What do you want people to know about invisible illnesses?
Just because someone “looks normal” doesn’t mean that they aren’t struggling with something! Many people with illnesses look healthy, but that doesn’t mean their health problems shouldn’t be taken seriously.
What was the hardest thing about launching Invisible No More, and what is the hardest part of educating people without invisible illnesses about the appropriate way to react to them?
Hmmm… probably all of the paperwork!
I’m kidding (mostly). While it was a lot of forms, the biggest challenge for me was gaining the confidence to talk about Invisible No More, and my own personal health journey. I have had to speak in front of large crowds, ask for donations, and lead volunteers over the past three years, and that was scary at first! Talking about my own health conditions was something that took a while for me to be comfortable with. For a while I wanted to pretend like they didn’t exist so I would “fit in” and be like everyone else, but that was really just hiding a part of me. Educating people about invisible illnesses can be challenging, because so many people have never heard the term. There are a lot of stigmas about people with illnesses and disabilities and what they should look like that you have to overcome before anything else.
What advice do you have for college women fighting their own invisible illnesses? What about for people without invisible illnesses when it comes to talking to people that have them?
Fighting an invisible illness is hard. It’s even harder in college when you’re living on your own and are in a whole new world. Remember that your health is the most important thing, and that it’s ok to rely on people for help! You can’t do everything on your own, and that’s ok.
When you’re talking to someone with an invisible illness, remember that they are just like you; just because someone has a health problem doesn’t mean that they’re different in any other way. Remember that your friends with health problems may be embarrassed to ask for help, and remind them that you’re there for them! You can do really simple things that mean a lot, like getting notes to them when they can’t go to class, driving them to an appointment, or just being there to talk.
What are your long-term plans for Invisible No More?
The goal is to eventually educate everyone on invisible illnesses and pediatric cancers. Did you know pediatric cancers only get 4% of the government funding that’s dedicated toward cancer research? Or that many invisible illnesses don’t have ANY approved treatments? What about that more than 30% of adolescents suffer from a chronic health problem? Most people don’t, and we want to change that. We also want the amount of funding and research dedicated to invisible illnesses and pediatric cancers to increase, so hopefully we can find more treatments, and even cures.
Where do you see yourself in five years?
In five years, I’ll (hopefully) have finished my undergraduate studies and be teaching elementary school while, of course, spreading awareness for invisible illnesses and pediatric cancers. My long-term goal is to go to grad school and become certified as a child life specialist, so that I can be a teacher in a children’s hospital for patients who are too sick to go to a regular school.
What is your favorite inspirational quote?
“I think we need more love in the world. We need more kindness, more compassion, more joy, more laughter.” — Ellen Degeneres
A 20-something-or-other with an appreciation for the following: emergency medicine, lipstick, the suburban mother wine culture, commas, musical theatre and Taylor Swift. Catch her screeching along to the radio with the windows down or buried in blankets crying over overly-dramatic television; there is no in-between.