How living with CLOVES has changed my life
By Lindsay - December 22, 2019
I never really thought my syndrome had a significant impact on me as a person. I was alone for most of my life, thinking I was the only person in the world with this rare disease. Until I was correctly diagnosed and met others like me, I really struggled with my differences.
I was born with a rare congenital disease that baffled every doctor my parents took me to. It took until I was fifteen years old to be correctly diagnosed and finally have the questions put to rest. I was born with CLOVES Syndrome, which stands for: Congenital, Lipomatous, Overgrowth, Vascular Malformation, Epidermal Nevi, Scoliosis/Skeletal/Spinal Anomalies. Each person diagnosed with CLOVES suffers from all of these symptoms on a variety of levels. Each case is unique, and in my case, I have an overgrown leg and foot, disfigured toes, and scoliosis. I also have lipomatous tissue and a vascular malformation on my abdomen. Overall, it is a genetic syndrome in which an individual may have few or many disfigurements in any area of the body. With those disfigurements come many medical issues as well.
Growing up, I never really realized my differences. My family has always been supportive, and I have a strong group of friends that have supported me all the way. It was when I got to high school that things got difficult. I saw girls wearing cute boots, sandals or high heels, and all I could think was the fact that I will never be able to wear any shoes like that in my lifetime. Because of my overgrown foot, the only shoe I could wear was the largest size New Balance tennis shoe. Even when I dressed up, I was stuck with tennis shoes. Being a girl, that’s really difficult to come to terms with.
There were days when I would sit in my room and ask God, why me? Why did I have to be born with such an ugly syndrome that no one else in the world had? There were a lot of nights of crying myself to sleep, asking questions like these. I would see my best friends get asked to school dances or go on dates, and all I could think about is that no boy would ever like me because of my leg. I never thought I would have a boyfriend. Who would be attracted to someone like me? They were thoughts like these that would flood through my mind all throughout high school. That was the worst part of my life of living with CLOVES.
When CLOVES was discovered, a lot changed. I knew what I had and why I had it. I met others like me, eliminating the feeling that I was completely alone in this world. Finding that community of other people who understand what I’ve gone through helps so much more than people may think. It’s almost life changing. Support does wonders.
When I got to college, I was nervous about what people would think about me and if I would be able to make friends. I’ve always been afraid of meeting new people because that meant I would have to deal with their shocked stares and answer their questions like why is your leg so big? Or what happened to your foot? It always felt awkward for me having to address that when I met new people. It still does. But in college, I found myself surrounded by people on my dorm floor who completely looked past my differences. I don’t think one person on my floor asked about my foot. And many of those people became my closest friends throughout college to this day. When people can look past my physical abnormalities and see me for me, that’s when I know they are true friends. I will forever be grateful for people like that.
Because of the incredible people that I met my freshman year, college was much easier than I expected. I began to build up confidence in myself, knowing that I had an amazing group of friends who didn’t care what I looked like. After starting college, I realized that it’s not that scary to meet new people. It’s not that nerve-wracking to be thrown into new situations. If I have a sense of confidence in myself and don’t forget that I am more than my syndrome, I can handle those tough situations. If someone wants to stare at me and laugh to their friends about me, so what? It’s not worth my time to fret over the immaturity of other people. I’ve learned to ignore it and just move on.
Living with CLOVES hasn’t been easy. Every day that I walk out in public, I have to hold my head high and walk strongly past every pair of eyes that stare in shock at my leg. I have to ignore the whispers and points as I walk past. The staring will never go away, but the embarrassment can. I will never be embarrassed to be who I am. I will never be embarrassed of my syndrome because I know who I am, and it isn’t CLOVES. That’s just a part of me. My syndrome does not own me. I own it.
It’s always going to be hard living with differences, but as soon as I changed my mentality, my life changed for the better. It’s about staying positive and not caring what other people may think. We don’t need that negativity in our lives, nor do we need the feelings of shame that may come with that. You should never feel ashamed of who you are no matter how different you look. Those are the things that I tell myself every day, and I have gotten more confident ever since. I embrace my differences and then I move on with my life.
CLOVES is one of the rarest diseases in the world, only affecting about 80 people worldwide. People stare because they don’t know what I live with. They have never seen this disease before, but that is why advocating and spreading awareness helps. And being a part of a community with people like me helps the most. Ever since I realized I wasn’t the only person in the world living with my rare disease, my mentality gradually began to improve to what it is now. That goes to show how amazing support can be.