advice for my teenage self with progressing scoliosis

• Know You Have a Choice: You are going through a lot right now. You don’t have to be so brave and strong, but somehow, you are. You are struggling inside while achieving a lot. The most important thing to know is this: YOU HAVE A CHOICE. You get to choose your treatment path and your life right now. It may not feel like it. It may feel like you have to do a million things at once. You will have to fight tooth and nail to choose yourself; this is the work of self-advocacy. Choosing yourself can be very counter-cultural. Perhaps everyone else in your position may have accepted the status quo and no one has asked for a choice before. IT’S OKAY TO WANT SOMETHING DIFFERENT FOR YOURSELF. Choosing to care for yourself and put yourself first makes a big difference when dealing with a chronic medical condition. 

• Engage in Creativity: Spend your time in less restrictive environments and in places you can explore your creativity. With scoliosis, your treatment already places restrictions on you, but there are many gems to be discovered in your inner world. Personally, I lost my sense of self going uniform to uniform and institution to institution while having an already restrictive condition, and it’s taking lots of time to find it again. Creativity and self-expression through music and art is what has been saving me. 

• Set Space in Your Schedule: However you find space in your life, take it, and multiply it by 10. Ask for more time and more space. Space is being physically taken from you with scoliosis, both within and outside of your body. You must take a mile when those in power give you an inch. You really don’t have to do it all. Just because you can try to, doesn’t mean you have to, and doesn’t mean you’ll be successful at it. You ARE allowed to choose what you strive at! Imagine what you could create by investing in what truly motivates you. Since your time is at a premium when you have a chronic medical condition, set boundaries to protect what is sacred for you. The feeling of relief in your brace when you get a break from your schedule is something to listen to. There's something beautiful about coming home from school and being able to rest rather than attending hours of resume-building activities. Allow your body time to rest. 

• Support your future independence: If working for income is an option for you as a teenager, and it feels like a good use of your time, do it! It can be extremely valuable to add to the feeling of choice. At 25, I still feel like a teenager, but now I KNOW I have choices in my life because I made it so. 

• Take Breaks: Capitalism wants you to continue producing. Dare to slow down. Know you are allowed to make choices that support your inner self. Sometimes, the costs of a really vibrant and high-achieving external world outweigh the benefits. The finish line will keep moving. Choose yourself. Society says to be dependent as long as you can and to build your resume at the cost of current satisfaction. Others may be placing unrealized dreams upon you to fulfill, whether they realize it or not. Self-advocacy is how you survive within a system that wants you to be constantly overworked.

• Motivation: If something’s not intrinsically valuable for you outside of external accolades, your motivation is going to run out. I personally lost something by not trusting myself and not allowing myself to make decisions based on my inner world when I was a teenager. I’d rather be really good at one or a few things I discovered through internal motivation over my life that I didn’t know I would be good at, than to try at 10 things someone else wanted me to do and be okay at all of them. Listen to your internal world; it may be SCREAMING at you to slow down or to pursue a different goal. 

• Disability: You are ALLOWED to identify as disabled if you choose, and to seek accommodations that help you. You do have a disabling condition, though it is frustrating to not have a clear reason why. You feel different inside because you ARE different, and you need different things than a fully able-bodied person. You may be internalizing ideas about what you “should” be able to do, since scoliosis is at times invisible. You get to decide what accommodations you need. 

• Bracing: You are ALLOWED to say yes or no to bracing. Looking back, I wish I had simply said “no” to the brace. It delayed a surgery that eventually felt inevitable and had a negative impact on my physical development, mental health, and body image. There were “no other options available” at the time, and I know my family and doctors did their best with the information they had. Still, others have found success with it. It’s YOUR choice. 

• Research alternative treatments: You are ALLOWED to ask what treatment alternatives exist. In 2026, research is being done on scoliosis treatment alternatives to “standard” bracing and surgery, including physical therapy, Schroth therapy, sensorimotor integration therapy, family-centered therapy, support groups, and concurrent mental health therapy. I wish I had known I could choose something else for myself and looked into these treatments. 

• Think Critically: Food for thought: If a surgery for a specific condition is thought to be low-risk and is continuously recommended, yet the medical field has not agreed on what causes the condition it’s treating nor begun to address the correlated mental health issues in the population with the condition, and it doesn’t work for everyone, why is the surgery continuing to be the go-to treatment? Could someone else have a financial incentive for you to have the surgery? Remember that you are in a very vulnerable position as a minor who has a condition with no known cause, yet receiving a “standard” way to treat the condition, and whose caretakers are grasping at straws for certainty. Will what works to treat a condition for one person really benefit everyone with the condition, if the condition’s cause is not identified or treated in the process? Your knowledge and your choice is your power. Sometimes, people or institutions really don’t have your best interests in mind. Doctors are humans and sometimes don’t know what they’re doing in prescribing “standard” treatment. Allow yourself to consider your position. 

• Surgery: You are also ALLOWED to say yes or no to surgery. While I would still recommend surgery if your scoliosis were to progress above 50 degrees, based on current research available, you DO have a choice. Whatever you do, continue to check in with your doctors and stay informed on current research. 

• Give treatments focused time: Whatever treatment you choose, I encourage giving it a real chance by taking a month-or-so break from everything in your life, before surgery forces you to. By opting to give newer treatments a real chance for a few weeks and taking a break from your schedule, you’re not giving up excelling at something, you are just shifting your focus. If you really miss what you were doing, you can ALWAYS go back to it. I often wonder if alternative treatments could have made more progress than bracing for me and perhaps prevented surgery altogether. If progressing far enough, scoliosis is a potentially life-threatening condition, so it is believed, and may crush your organs. With how early your scoliosis has been identified, pursuing treatment that’s focused on your and your family’s overall wellbeing and gives you skills to carry throughout your life and can have the greatest impact on your future. Yes, these therapies take time out of your schedule. Your family may need help understanding, but treatment progress can be easy to measure and exciting, as you could see your curve numbers go down and celebrate that progress. IT’S OKAY TO PUT YOUR LIFE ON HOLD FOR A LIFE-TRANSFORMING TREATMENT. 

• Find Community: You are not alone. Scoliosis is not a condition that requires isolation, and you are not the only one with it. You are allowed to find community online or in-person with people also dealing with scoliosis. You are allowed to ask others about their experiences with treatment modalities. Finding others going through the same thing can be validating and support your sense of agency. 

As I allude to in these poems, I lived most of my life at the cost of my internal world. Finally giving myself permission to center myself has had a healing impact on me, and I want to share my story. I know this work will not appeal to everyone, and it doesn’t have to; I just want one person to be positively impacted by this or have their mindset altered. There are a lot of hard truths here that I have known inside for a long time. If I need to scale them back in the future, I will, but from my experience, I know them to be true and maintain them until proven otherwise. Truths beg to be spoken, and I am happy to debate any of these ideas within a space of curiosity and compassion. 

Live your truth, 

Sophia