10 Things I Wish I Could Tell My 13-Year-Old Self About Scoliosis

Dear 13-Year-Old Me,

Don’t freak out, but your spine is shaped like an S. Everything will be scary for a while, but it will get better. You’re about to embark on a journey you won’t like, and along the way you’ll learn some amazing lessons. But just so you know, even 20 years from now, if you can imagine being that old, you’re still going to be dealing with this scoliosis stuff. You will learn so much about taking care of yourself, but obviously it won’t be easy. Here’s some advice you should know.

1. Everyone’s story is different.

Scoliosis is a “hang on for the ride” kind of situation, but it can be comforting to remember that you only have to live one story. Learning other people’s stories can be invaluable both for emotional support and medical understanding, but sometimes you learn scary new things. Some big fears will never happen to you, and you’ll be blindsided by things you didn’t know could happen. Your story, for better or for worse, is unique and is not over. Try not to spend it worrying.

2. We are millions.

Scoliosis is common. It’s not weird. You are not alone. This new thing called the Internet is growing into an amazing place where strangers will be there for you to listen, encourage and share what helps them.

3. It’s OK to feel bad about what others don’t see.

Just because worse things can happen to a person doesn’t mean your emotions about this aren’t valid. They are. Positive sentences that start with “At least…” or “after all…” or “thankfully…” have their place. It’s great to be upbeat, but there is a time to not compare yourself to anyone else and allow yourself to feel how you feel. Sadness and frustration don’t mean you are unthankful or faithless. Your feelings are normal.

4. Your scoliosis is incurable.

This may sound negative, but it is important because staying healthy will be extra work for you. You’re stuck with this wonky body whether you like it or not, and you are in charge of taking care of it. Seeking offbeat cures can be both futile and dangerous. Your “little” daily decisions are where the struggle happens. This doesn’t mean it’s your fault when things aren’t going well, because remember — you’re incurable. The goal isn’t being free of scoliosis. The goal is doing the best with what you’ve been given.

5. Get used to feeling uncertain.

Don’t expect doctors to answer every last “What if…?” or “What happens when…?” They will do all they can to help, and you will probably still feel uncertain because life at its best is full of unknowns.

6. Stay in your best shape.

Yeah, maybe you won’t have the ideal shape we see glorified everywhere, but stop comparing yourself to anyone. Work your core and work it some more. Keep working your core. It’s not easy, but it is so important. Being out of shape is complicated and harder to recover from for you because of scoliosis. Your couch potato tendencies are the enemy. Sitting at a desk is the other enemy. Work your core.

7. Words are not the enemy.

Yes, a scoliosis diagnosis brings with it a nasty new vocabulary about everything that’s going on with you. As much as you hate them, those ugly words describe your body parts as they are. Words are knowledge, and knowledge is power. Words are not the enemy. They are your friends.

8. Good luck balancing precautions and the life you want.

Yes, that is sarcasm. You’ll get injured doing nothing wrong, and you’ll get injured following medical advice to the letter. Every single day you’ll make decisions about risks and tasks and experiences you want. You’ll never find the perfect balance. You’ll be too careful, and not careful enough. You can’t win. Inform yourself (not halfheartedly, but really really well), about how your body works, how your spine affects it all, and then do your best to make good decisions.

9. Be thankful.

It’s easy to focus on the ugly words and the ugly shapes, or the physical pain or complications you’re facing. Perfectionism will ruin as many days as you let it. Think often about the body parts and processes that are at work keeping you alive and breathing and kicking. On the worst day ever, you have so much to be thankful for. It may take decades, but if you watch for it, you may even find aspects of your challenges that you can be directly thankful for.

10. Don’t worry about what people think.

Whether you stay unfused and twisted forever, or you end up with more scars someday — no shame. If someone looks down on you for being off-kilter, that is scientifically 100 percent their problem.

One last thing. This year might seem like it’s never going to end, but someday it will be a distant memory. Life will be amazing. Trust me – you won’t want to miss a thing.

Stay strong, Kiddo!

Love,

Future Me