I often get asked, “How did you come up with InvisiYouth? The idea of helping teenagers in pediatric hospitals—while needed—is so specific so, how did you think of it?” The answer to it is simple, when I was a teenager, I used to be one of these teens dealing with chronic illness in pediatric settings. Way back when I was a 15 years old, with a typical teenage invincible attitude, I spent all of my time either on the tennis court or in the library writing my latest short story. For over eight years, I was a competitive tennis player and used every opportunity I had to practice more and more, no matter how sore my body might have been. At one early morning practice, my life would change forever.
While doing some basic ground strokes with my coach, I kept feeling this burning pain throbbing into my left dominant hand and when I tried to switch my grip to alleviate the soreness, I made one wrong hit, my thumb popped and immediate bone-crushing pain ensued. Flash forward a week, and my hand looked anything but normal.
Swollen four times the size and bruised to the deepest shade of blue, my hand looked horrendous but, the pain was even worse. To put it briefly, it felt like I was being whipped with barbed wire while being lit on fire within the confines of my hand. None of my doctors knew what was happening and finally one pediatric orthopedic said I might have Reflex Sympathetic Dystrophy (RSD). In a nutshell, RSD is a neurovascular condition that results from an injury to your nervous system. Pain from an original injury gets damaged and changes into an abnormal neurovascular condition which causes a cycle of intense pain and injury to the affected area; your body is continuing to respond to an injury that does not exist any longer.
For the next two years I was referred to countless doctors, from rheumatologists to cardiologists, neurologists and hematologists but no one could treat my condition correctly. They would all say that I definitely had RSD but my symptoms were so abnormal and unresponsive to physical therapy (the only known-successful form of treatment) so they believed something else had to be medically-wrong. That reason alone led me on the wild goose chase for an answer. Growing through my teen years with this health problem, all teenage drama tends to be heightened, obstacles are less about the latest social media trends or hallway gossip and more about when your next physical therapy session was or which doctors appointment I had to schedule between class, which often meant missing school, clubs, and seeing my friends.
My life seemed to be going along parallel to my friends, both moving in the same direction, but taking two completely different paths that never intersected. While my friends were planning their lavish Sweet 16 parties, I was lying on a hospital bed having an unsuccessful nerve block. And while I was spending my summer in recovery from my spinal correction and fusion surgery, they were off visiting colleges or lounging at the pool. Needless to say, life was different for me, and it would take years before any treatment would pay off. The entire second half of my teens was spent dedicated to my health condition and trying to resolve the problem that at times, felt like no one had the exact answer.
Sure, when people see me now, they see a normal, healthy young woman in her twenties but, they really don’t understand that underneath it all, they are missing a big part of my past that makes me who I am. A part from my teens when the notion of “healthy” and “normal” were never even considered as verbs to describe me. And while yes, I still deal with residual RSD and perpetually feel bruised on the left side of my body with the occasional flare-ups thanks to cold weather or the unfortunate stumble with my left limbs, it has become my new normal. I don’t need people to pity any part of my life because I am so grateful for every day that I have, good or not. Dealing with a chronic illness in my past has opened my eyes to being beyond grateful and happy about life, to find the humor in even the worse situations, and to live my life the way I dream for it to be.
It was almost three years ago when I first came up with the idea of InvisiYouth Charity. I had spent so much of my teen years in over 31 pediatric doctors’ offices, facilities and hospitals but the one singular trait through majority of them was that as a teen, I never felt represented. More that I was misrepresented in every way as a teenager in pediatrics. Either doctors treated me like an adult and ignored my parents, barely explaining anything in a way I could understand, or I was treated like a child where the doctor would only talk to my parents as if I wasn’t in the room. I was surrounded with pain charts that had smiley faces (which I needed to point to when asked my pain level—usually it was the face with the sad expression and one tear coming from its eye). Or I would need to listen to jokes and put on hospital gowns with teddy bears or circus animals, nothing ever appealing to my growing fashion sense that would have made me a little more comfortable in the situation. Nothing about my pediatric experience allowed me to feel like a teenager but rather, I felt like I was caught in this gap, this invisible section of pediatric settings, that didn’t exactly know what to do with my teenager mentality and lifestyle.
This feeling of never having a voice in my health began to set a fire inside me, a passion to make a change to this community. And it wasn’t just me…constantly I was hearing from other teens who were still going to their pediatric doctors or had chronic health conditions making the same claim: Why is there no place for teenagers in pediatrics? How can we learn to deal with pediatrics as a teen, and for clinicians to learn how to interact with us? Where is our voice?
That is why InvisiYouth Charity was born. Teens are a unique group and they need to be helped as such. That’s what InvisiYouth is all about—Helping teens in pediatrics find their own voice.