Meet Rachel, a 20 year old college student from New York:
“Not broken, just bent.” This expression not only describes my emotional self, but quite literally describes me. I am Rachel and I was diagnosed with scoliosis when I was 13 years old. For those of you who don’t know, scoliosis is the bending and twisting of the spine.
When I was 14 and entering high school, my doctor told me I would need to wear a back brace for 16 hours a day to make sure my spine didn’t continue to curve. High school is hard enough with trying to fit in, resisting peer pressure, and getting good grades. Now I had this big piece of plastic strapped around my body. I was so ashamed of it that I decided not to wear it to school. I wore it as soon as I got home up until it was time to leave for school the next day. I wanted to keep this a secret from as many people as I could.
I was so excited when a year and a half later my doctor told me I was done growing and didn’t need to wear the brace anymore. Unfortunately, she was wrong. Once I stopped wearing the brace, my curve got worse. At 17 I was having really bad back pain all the time so I went online to try and find some alternative treatment options. I found one and started it as soon as I could. It was this new chiropractic program that required me to commute 2 hours 3 days a week to chiropractor in New York City. On days I wasn’t commuting after school, I was doing 6 hours of the exercises at home. I was excited to hopefully lose some of the back pain and for a while I did. Then it just got to the point where it was so exhausting trying to do the exercises, get homework done, and still try to have a social life. I had to stop, it was hurting me more than it was helping.
From there I decided to get another opinion. This new doctor told me I would have to get surgery to correct my curve. I was absolutely terrified. So there I was back on the computer again and that’s when I found the Curvy Girls. Curvy Girls International is a support group for young girls with scoliosis (the condition is most common in girls) that was started by a Long Island, NY teen. I was about to start college in that area so I decided to send them an email.
I went to my first meeting in September of 2011 and was amazed at what I found. The living room of this girl’s house was packed with girls who were so open about their condition. They welcomed me with open arms and were genuinely interested to learn about my journey with scoliosis. I immediately felt like I belonged…finally. These girls were so proud to talk about what they had been through and offer advice. It was such an inspiration to me. I continued to go to meetings up until right before my surgery. It was there that I made the decision to not suffer in silence anymore. I wanted everyone to know about scoliosis, that I had it, and that I had a great group of supporters.
I took the news to Facebook, as this was the ultimate social hub for my peers. Once I did this, I was amazed at the words of encouragement they offered me. Then all of the sudden people started telling me about friends they knew that also have scoliosis. I realized that my town needed a Curvy Girls group so I started one with the help of the Long Island group. I started it in May 2012 right before my surgery.
To promote my group I posted flyers, sent out emails to newspapers, and did everything I could to spread the word. We started with 3 members and now a year later we are up to 15 and still growing! Being a part of this group and leading my own chapter of it has helped me to find my voice in a way I never thought I’d be able to do.
Finding your voice can be scary no matter what your story is; whether it’s physical or emotional. Want my advice? No matter how scary it is, find one person you trust and TALK. I’ve learned the hard way that keeping things in is not good for you. It can be a friend, relative, school counselor, etc. You might be pleasantly surprised at the reactions you get. We all spend too much time worrying about other people and often forget to think about ourselves. Take a moment each day and check in with yourself and say, “What do I need to feel good today?” YOU are the most important person in your life and you can do some pretty incredible things, but only if you are at your best first. TAKE CARE OF YOU.
One last thing…always remember that just because something feels impossible, doesn’t mean it is. With determination and support, you can get through it. I believe we all have a little bundle of strength tucked away inside of us, we just need to find a way to let it out.