5 things I wish I could tell my 14 year old self about scoliosis
I will never forget the day I was diagnosed with scoliosis. I was 14 years old and until that day, had never had anything medically wrong with me. I was a normal teenager going about my life. I didn’t even know what scoliosis was.
The day I was diagnosed with scoliosis was the day my life changed forever. At 14, I thought it was the end of the world. I thought my life was over and that I’d be in a wheelchair before I was 30. I was terrified, distraught and used to cry myself to sleep each night. Back then, I kept my scoliosis a secret and didn’t tell anybody about it. I was ashamed of how my back looked and of being “different.”
So, what would I tell my 14 year old self now, 17 years later?
Having scoliosis will make you a better person
You don’t know this yet, but in a strange way, being diagnosed with scoliosis will be one of the best things that ever happens to you. Sounds weird I know. Yes, there will be tough times ahead and some days will be hard. But having scoliosis will change you for the better. It will give you drive. It will give you ambition. You will be more determined to push yourself and achieve in life. Trust me – you won’t want to let scoliosis win. I know it’s hard to believe right now, but in the future you will actually be glad you have scoliosis as it will make you who you are.
You are stronger than you think
Don’t worry – you will get through this. You may not realise this right now, but having scoliosis makes you incredibly strong and brave. You will get through the surgery and come out the other side a stronger, happier and more confident person.
You will achieve so much you never thought possible
Did you know that in the future, years after your scoliosis surgery, you will achieve so many amazing things? You will be very active and determined. Please don’t worry – having scoliosis will not stop you from doing anything you want to do. Getting through the surgery will make you want to push yourself and live life to the full. You will go on to get a masters degree, you will travel far and wide, run races, climb mountains, lift weights and have a real thirst for adventure.
Never be ashamed of your scoliosis – embrace it!
I know you hate your back right now and it sucks to be different. But please don’t be ashamed of your scoliosis – it makes you unique and gives you a story to tell. You CAN and WILL turn a negative situation into a positive one.
In the future, you won’t be ashamed anymore, in fact, you will be proud. You will not hide your condition but will publish your story online for others to see. Your experiences will help and inspire so many others with scoliosis.
It’s good to talk
I know it’s hard but you really need to talk to people about your scoliosis. It’s so easy to pretend it’s not happening but you really do need support. You need to talk with your parents. Tell your friends, they will be there for you. Talk to others who have the condition, you’ll be glad you did. Don’t keep things bottled up, it’s the worst thing you can do. In the future, you will discover hundreds of people in the same situation as you, feeling the same emotions. You will realise you are not alone and so many others have backs that look just like yours. Once you accept and embrace your scoliosis you will feel so much better, trust me.
Louise X
I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.
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Nice post..
Don’t really understand your post. You didn’t find out until you were 14? And soon had surgery after you found out. How could you not know something was wrong by that age? Were you braced at all? Or did it come on suddenly somehow? Or did you just not remember it being brought up to you? For it to be so severe enough to suddenly have to have surgery?
I’m near 50 yrs old now but I was boarded as a child so I could only sleep on my back as an infant. By 5th grade scoliosis screening I was reminded of my “S” scoliosis. And at age 13 I was braced throughout the rest of my junior and high school years. This I say makes a young person strong & brave. I, as I am sure others that have had to wear them back in our day was teased and ridiculed. Kids can be cruel. You are right. But if you did have surgery at that age and it was a wonderful thing how could they see anything was different about you? Just curious. Some things are missing in your article.
Hi Teresa,
I developed scoliosis when I was a young teenager but it wasn’t spotted until I was 14. I think because I had two curves in the shape of an S they kind of balanced themselves out and it made it less noticeable to the untrained eye. I wasn’t braced because by the time I was diagnosed at age 14 it was too late for bracing, as my curves were already very severe and I had finished growing. This is why early detection is so important. It was severe enough for surgery when I was diagnosed but I was too scared to have the surgery so I was monitored each year with X-rays and I just kind of got on with life and tried to forget about it. When I was in my early 20s, I started to get a lot of pain and I was told my scoliosis had got even worse and was at risk of progression throughout my life. I eventually decided to have surgery at the age of 24.
Hope that helps
Louise
I am 15 and was diagnosed with scoliosis at the start of this year. I think this post is/will be my life story. I too, had finished growing too late for a brace and have said no to surgery because i am too scared. I am in pain a lot but just get on with it really and try to forget about it. This post was very helpful for me, thank you x
Te recomiendo que busques un centro quiropractico o un fisio terapeuta eso ayudara con el dolor y evitara que empeores sin la cirugía. Tal vez no se cure por completo pero evitara que estes peor
Hi! I found out I had scoliosis at a school physical at the start of 6th grade – it was bad enough to refer me to a doctor. They caught it in august 2009 at 25 degrees, & by november of that same year it was almost 10 degrees worse. I had surgery in January 2010 – my curve was roughly 40 degrees. I never had the option of the brace & was immediately pushed to surgery at 11 years old. Just to let you know that each case is very VERY different. 🙂
I wish to say the same to my 13 and 14 year old self. I had two surgeries and hated talking about it and cryed every night because I couldn’t take it no more and my brace hurt me so much. I never liked talking to people about it until I cryed my eyes out. And before those surgeries I only remember crying when I was 10 when I found out I had scoliosis. My parents were broke poor and they mean the world to me now that I know they did it all for me. Scoliosis is no joke thank you for the post.
I really just found out I have scoliosis but my husband says my spinelooks awful but I have so much pain when I try to clean the house but I don’t know if it has to fo with scoliosis . I see a primary care doctor and he doesnt really tell me a lot . I havent seen the xrays because his office doesn’t have anything to dhow them on but I really like my doctor. But I really hate the pain , I cant even drive the car very far, it hurts my arms . I had surgery on my neck in 2001 didnt help wish I never had that surgery. So I hope that I can be as stronge as you and grow a back bone lol thank you for listening just need someone to talk to every now and then about this
I found out when I was seven, and I had a moderate curve. My primary doctor rode it off, and didn’t make much of it. Now I am 14 I have a 45 degree angle. I was never brace and should have been when I was seven. Now I am having to meet with a spinal surgeon, and I am working with PT to try and improve some of the problem so I don’t have to get surgery. Everything hurts because everything is connected. Scoliosis effects every joint in you body. It kills me just to think about how if I had been braced maybe it would not be as severe as it is now.
Life is not a Fairy Tale, so I am Not going to lie to whom ever reads my words. I only ask that you read it All.
I found out I had scoliosis during a school examination. A specialist said that it was nothing to worry about. Forward a couple of 3 years and a move from Qld to WA, then at 12 I was put into a brace, which did not work. The Specialist said that my curve was slowly cutting my right lung off and it would take 1 operation of an insert of a Harrington Rod to correct it! It still didn’t work so he said that I needed another operation for the insert of “Dewise”. Unfortunately my lungs weren’t both strong enough at the time and it took another 6 weeks, but I was allowed out with a neck to butt plaster… Then it took 5 plates with very long screws to finally correct it enough for me to be healthy enough to be OK.
It took 2 years from age 12 to 14, 2 major operations, body plasters and braces and “long” hospital stays and a lot of pain that I can still remember today.
But the processes that exist today are SO much better than when I was young. I would support anyone who needs to have these kinds of operations, so they can live a good life. Because without my operations I would not have been able to enjoy riding my horses when I was young or do my 2 years of backpacking traveling.
Yes everyday is living with a level pain that only those who have gone through the same thing can appreciate. I do not take pain killers as such, only paracetamol.
Why, because they are either addictive and or do not work for long before my body gets used to them, plus as I have aged my tolerance to them as diminished and I would rather the pain then the side effects.
I do not judge anyone else if they generally need them. I survive on rubs and patches and when I am good I do Meditation and pool exercises.
So yes the pain does get worse as you get older, but then again I am not an over active person. But they did not have very good “staying healthy/what you should/shouldn’t do when you are a scoliosis survivor” in those days.
So no one told or showed me how to take care of myself. Which meant that I went out on full throttle into my teens early adulthood, not knowing that I might be doing more damage to my healthier joints…
What can you do, stay active and learn good exercise practices for the body and for the mind meditation, Yoga/Tie chi (if you are able) if you are young.
If you are older, you are NEVER too old to learn….Do water exercises, gentle Yoga/ Tie chi and meditate. I am always available. I am now 55years old and proud of it!
I’m 52 and I too was diagnosed when I was 14. It wasn’t until I started having refer pain in my arms. Doctors didn’t look for it so much back then I feel. I too have an S curve. I’ve never had surgery or wore a brace. I have had different pains over the years but have coped very well. Now I Can feel a pull from centre back when I walk. I just take it in stride. Now…I was 20 when I almost died. I have a rare neuromuscular sleep apnea. I don’t have a ” real” diagnosis but am dependant on a ventilator non- invasivly for all these years. I may hold the record for that. Doctors say my back isn’t related to that?! Who knows. I mean we don’t have answers really. I have yet to find anyone with a similar story so that’s why l’m sharing. If you saw me you’d never guess btw.
This was an amazing post! This spoke to me and my 11 year old self. It gave me chills to read. I was having a lot of pain and got checked in school only to find out i had scoliosis. I was ashamed and felt like it was my fault i did not even tell my bestfriends until the week before my surgery. My curve went from 40 degrees to 65 degrees in under a month that is when i found out at 11 i would have go have surgery. That surgery 20 years ago was so much different than it is now and needless to say i was terrified. I never felt like a normal teenager in middle school. I couldn’t even carry my own backpack for about a year. I eventually learned to push myself and do things in spite of my surgery. I too believe it made me a better stronger person. I never comment on blog posts but this spoke to me more than anything ever has! Thanks for this
Thank you SO much. Your comment has made my day XXX
Yes thanks alot I’m going on 27 and unless you have this condition nobody would ever understand.
I have had it for 50 years and I am not glad I have it. I have dealt with it but always wished I had a normal back. You do have to deal with what you are given.
I am 60 years old and was diagnosed around age 13 with an S curve with rotation. Kids weren’t tested for scoliosis back then. It was brought to my someone while I was reading an article in Time magazine. My surgeon advised against surgery. Back then it would have included full body casts, walking casts and braces for years! We tried exercises but being a teenager I didn’t continue them after about a year. I carried two large babies full term with natural deliveries. My curve is severe but most of my close friends didn’t realize my issue for years. I’ve learned the type of clothes I need to wear to make it less noticeable. My best friend is my chiropractor, only see him when I’m hurting, usually from overuse. His advice has helped me know what I should avoid at the gym but with his encouragement I have been at the gym regularly for about five years, wish I had started sooner. Regular workouts have lessened the number of times I see him!! He keeps everything loose and I keep going!!
Hi Nancy!
Thanks for your comment. I’m so glad keeping active helps you, it certainly helps me. Keep going! Louise 🙂 xx
Thank you for this post. My daughter is 12, just diagnosed with severe double scoliosis and will need surgery soon. She is scared and trying to deal with this, and we are trying to find ways to help her too. There seems to be so many down-beat posts across all social media about scoliosis, and though they may reflect a truth about some people’s experiences, can give such a negative and pessimistic outlook to young people grappling now with how scoliosis is going to impact their lives. Sharing your positivity is so valuable as so much comes from our thoughts, and this can only help. Thank you ❤
Hi Hannah, thank you so much. Your comment makes all the work I put into my blog worthwhile! I wish your daughter all the best with her surgery. Whilst being diagnosed with scoliosis is not the nicest thing to go through, especially at such a young age, it’s amazing what they can do and it is possible to live a full life post scoliosis surgery! x