You have just found out that you have scoliosis. I know what this is like; I was diagnosed with major advanced double curve idiopathic scoliosis when I was 14 years old. My Doctor told me at my second appointment, “If your parents don’t brace you immediately, I will most likely refer you to Johns Hopkins for surgery at our next appointment.” His words were not good news for me, just like I imagine your scoliosis diagnosis is not good news to you.
Scoliosis will test your sanity, but I promise you are about to become stronger. I know this because scoliosis has made me stronger. Here are some things I struggled with in my scoliosis diagnosis and what I learned in the battle:
Scoliosis made me feel broken. When I looked at those first x-rays, a list of things ran through my mind, but one of the first thoughts I had was this: There must be some mistake. That picture of me is broken.
But guess what?
There wasn’t anything broken about me. My back was bent, but it was not broken. Those curves became part of my life–up and down, left and right, curved and straight. In the end? Those curves were mine. I chose what to do with them and that meant I made the most of them.
Scoliosis made me feel ugly because none of my friends had this and they couldn’t relate to my struggle. I would compare myself to other girls, noticing how easily they were able to bend at the waist or not worry too much about what they wore. They didn’t have to hide a brace, after all. After a while, however, I got tired of worrying about an uneven waistline because my brace jutted out from underneath my clothes. I accepted the plastic as my armor in the battle and I quit being so self-conscious. This was a major victory (you will have them too)!
I admit I also experienced a lot of pain. The physical pain was extremely hard for me; it tested me. It’s hard enough to manage the peer pressure of teenage life, the natural changes your body endures, and the desire to fit in with your friends. When you throw a scoliosis diagnosis into the mix, and you must now suffer physical pain, it all seems so unfair. A teenager should simply not have to go through this, but there I was with a scoliosis diagnosis and now here you are too.
I’m sorry, it’s hard, but I know you can do it. You will do it because you are a fighter.
The pain will come in waves. At high tide, I suggest making the most of it–that’s what I tried to do. I would play a game, go for a run, or hang with a friend. Don’t sit around in your pain, live your life instead.
If you have a bad day (and you will), promise me you will go easy on yourself. This scoliosis stuff is hard. Just pick yourself back up, dust yourself off, and hop back in the saddle.
Let me leave you with this bit of news: I’m almost finished bracing. When I started on my brace journey, 90% of patients who have a curve as severe as mine must have a spinal fusion with a long, painful recovery.
I defied the odds.
With my hard work, determination, and 23 hours of plastic brace living, I went from a 90% chance of back surgery to a million in a half chance. In other words, there is virtually no likelihood I will have to have surgery. Ever.
Here’s the good news: if I can do this, you can too.
You got this! I believe in you. Go show the world how amazing you are and show them with a scoliosis diagnosis.
With much hope and love,
(If you want to chat about the challenges you are experiencing, please feel free to contact me at email@example.com. I would love to talk to you, support you, and even pray for you!)
Read more patient stories like this from around the world.