5 things I do because of my scoliosis…
1. I constantly look at my back
When I’m at the gym, or walk past a shop window or mirror, I just can’t resist sneaking a look at my back. Sometimes, I swear people think I’m checking myself out. I’m not, I’m just looking at my back. I can’t help it. Post-surgery, sometimes it’s admiration. As in, I can’t believe how straight it looks from the side and that the rib hump is gone, even 5 years later! Although, other times, I’m worried about how it looks from a certain position and in a certain outfit.
2. I’m constantly paranoid people are looking at my back
This was far worse before surgery and immediately after surgery. It was so bad that, at the gym for example, I wouldn’t go on the machines at the front of the gym because I knew there would be people working out behind me and I’d be paranoid that they’d be looking at my back.
Now, 5 years later, day to day I don’t worry as much about this but if I’m wearing a skimpy top or bikini I will be more conscious, especially if the top shows my scar and shoulder which still protrudes slightly. I still won’t get changed in front of people (even people I’m close to) and activities such as swimming/going to the beach still make me uncomfortable as I think people are staring at my back.
In most cases though, they are probably not. As people without scoliosis probably don’t spend as much time staring at people’s backs and have their own things to worry about!
3. I get back envy
I just can’t help myself looking at other people’s backs and wishing mine looked like theirs. Especially when I see people wearing backless dresses/tops which I have always longed to wear. I can’t help it, I think it just happens subconsciously now. The funny thing is, these people may be looking at me wishing they had something I have. I always remember a lady staring at me once whilst I was swimming and I was certain she was looking at my back. In the end, she came up to me and said: “How do you get such a flat stomach?” I’ve come to realise that everyone has their own insecurities.
4. I hate people touching my back
This is something I just can’t stand. Pre and post-surgery. Most of my back is numb so it just feels weird but some parts are quite tender. I’m also conscious of the way it looks and that my screws protrude. For this reason, I avoid back massages, so if I go to a spa, I’ll just stick to facials or manicures. I know a massage would make me highly uncomfortable and self-conscious and I’d be worried they may do some damage if they weren’t a trained physiotherapist. I do get jealous when friends go for a massage and when my back is sore sometimes I long for one, but I just don’t want anyone seeing/touching it. The closest I came was in Thailand when I went for a spa treatment and the lady saw my back and said “broken.” Yes, I am, please don’t remind me.
5. I take photos of my back
This was worse before surgery and immediately after. Before surgery, I took photos of my back all the time, in different positions. I was paranoid my scoliosis was getting worse and it took over my life. Around that time, I had literally thousands of pictures of my back on my laptop. I used to think, if anyone found my laptop they’d think I was really weird!
After surgery, I took photos daily probably for about a year afterwards. As I wasn’t working at the time and was at home recovering, it became an obsession. I’d stare at pictures of my back for hours, to make sure nothing had moved/changed. Not only that, I’d also constantly compare pictures of my back/x-rays to those of others who had had scoliosis surgery to see how my correction compared. At the time, I was convinced my correction was not as good as most peoples and I was actually quite unhappy following my surgery. It really was an all-consuming obsession but I think looking back, most of it was in my head.
Luckily, I’m past this stage now and I rarely take photos of my back these days (except for my blog!) Mostly I’m too busy to think about it nowadays but I’ve also accepted that the correction I got was good, that I was extremely lucky with the outcome and that I need to let go of the past and move on with my life.
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The psychological side of scoliosis is so often overlooked, but I think my behaviour over the years shows just how much having scoliosis has affected me psychologically. And I don’t think I’m in alone in the way I think/behave.
If you have scoliosis, can you relate to any of the above? How has having scoliosis affected your own behaviour? Feel free to comment below 🙂
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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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Hello Louise, I hope everything is going well. Congratulations on your success with your surgery. I read your story on-line. My son has scoliosis and the hump as well. I wanted to know how you were doing now and ask a few questions.
Hi Denise – of course you can ask me some questions 🙂 Please feel free to email me [email protected] x
Hi Louise,i had my last surgery in 2013 and funny enough I thought I was the only one who did everything you have mentioned. I used to have serious back envy. Sitting straight and walking straight is still a work in progress but I thank God I am alive today. Scoliosis…we are tough like that.
Thanks Tariere, we certainly are! 🙂
Thanks for being transparent. I have scoliosis and am considering surgery. It is a big decision that I have to make. Any advice?
Hi Jamaica,
Thanks for reading my blog and for your comment. I know what you are going through as I too had to make that decision about whether to have surgery and it was honestly the toughest decision I have ever had to make. My advice would be to talk to as many people as possible who have been through the surgery, this helped me so much. I joined scoliosis forums (there are quite a few out there and scoliosis groups on Facebook) and asked as many people as I could for advice and read their scoliosis stories. I would also say it depends on how severe your scoliosis is as surgery is really only considered as a last resort if the scoliosis is severe and/or progressing. If you haven’t already, it’s important to see a scoliosis specialist and get their advice too. Good luck 🙂
Louise
Dear louise,
I am 13 years old and i have scoliosis and i was diagnosed at the age of 11. For nearly a year now i have been wearing a back brace ( which i have to wear 23 out of 24 hours a day) and can very much relate to that feeling of insecurity where you feel lie everyone is looking at you. similarly to you whenever i go swimming or am in a situation where my bare back is on show swell as whenever I bend down people go “woah! whats wrong with your back ?” or “that so freaky” as my spine is very easily seen as it is at a 52 degree angle . in the past six months, i have seen 3 specialist and all of them have said that sugery will be needed once i have stopped growing or at around the age of 16/17, Which makes me feel quite frustrated as i personally would love to have surgery ASAP to stop the pain and so that i dont have to wear my brace but also so that i can get on with my life and live like any other teenage girl. However my mum -who had her first hip operation at the age of 11- is very con towards me having surgery so we constantly have controversy as to who gets to choose what happens to me .
if you could give me some advice about how you learnt to be so open ,as to put your story on the internet so that anyone could see , that would really be appreciated very much so!
your story has truly inspired me to be more confident and happy with the way that i am .
yours sincerely
Emily Thomas
Hi Emily,
Thanks so much for this – comments like this really mean the world to me and I’m so glad that my story has helped you in some way. That is the main reason I wanted to share my story and comments like yours make everything worthwhile 🙂 In terms of advice, it took me a very long time to be open and honest about my scoliosis. When I was your age, nobody knew I had scoliosis. I kept it hidden and I didn’t want anyone to know about it. I was afraid of being different and what others would say/think. I think learning to accept my scoliosis and to be open about it was one of the best things I ever did and it made me much happier. It was very difficult for me to do initially though and I think for me, it came with age and may be something you find easier as you get older. Other advice would be to talk to others around your age with scoliosis as much as you can (either on forums or Facebook groups for example). Talking to others with the same condition made me feel less alone and more confident about my back which helped me open up more. Also, I just wanted to add that my parents were also very against the surgery and I spent much of my teenage years arguing with them about it, so I know what you are going through. At the end of the day though it’s only because your mum cares about you and wants the best for you.
Thanks again for reading my blog and for your lovely comment.
Louise X
Hey Louis,
I do feel the same way as you did. Having back envy is the worst. Most of the time I felt so insecure with other girl’s back. Somehow, I’m glad that I managed to go through all this alone since the past 6 years. But still its been really though for me. Yet until now I haven’t told anyone about my scoliosis. I find out about my diagnosis myself. I still don’t have the courage to tell my parents about this.
As I was reading this…I kept thinking “yep” and “that’s me” over and over and over again! I had a horrible rib hump before my spinal fusion and now it’s almost completely unnoticeable! I totally understand what you mean by “back envy” and I loved reading your post!
Thanks Erin xx 🙂
Hello my name is Susan and I’ve had two scoliosis surgeries my spine is fused from the top clear down to my hips with screws in my hips and I had to have my neck done but that was a different thing and everything you said is so true to this day it’s been almost 3 years I still look in the mirror every time at my back I hate my back I don’t like looking answe I don’t have clothes on I hate seeing my back in the mirror and I’m envious when I see people wearing tank tops with the backs cut out or dresses because I know I could never do that I mean my hump is gone and my back is way straighter but I have a huge scar and it still is not a hundred percent straight but I am thankful that I have the surgery because my curve was so bad it was compressing my heart and my right lung so my lung wasn’t functioning properly so I had to have surgery and I’m better now that I’ve had the surgery I still have pain that’s the only thing I’m in pain everyday all day long but I work through it and I don’t let it stop me. The one thing that people do not understand is the psychological that goes along with having scoliosis it has changed who I am I take antidepressants which I didn’t before I know I kind of found negative about all this but it’s really not I’m just telling the truth.
Hello! I had surgery when I was 13, I am now 30, and I can relate with several of these. Most of all I feel you on the back envy. I wear my scars proud and don’t let scoliosis or my scars stop me from wearing anything but I do find myself longing for that perfect looking back! This was a great read and I am glad I stumbled upon this post.
Hi stumble upon your blog on pinterest. I can so totally relate to you! Everything is exactly on point. I want to photographs some of my scars soon. Its been 13 years but it feels like just yesterday i went into the operation theatre! Thank you for the writingg 🙂
Thank you Nina 🙂
Hi Louise. I relate so well to the above mentioned but most importantly, I hate people touching my back too or I get anxious when I am about to hug someone.
Hi Louise, I found that floating in a pool really helps relax my back and lessens the pain I have. One way to avoid showing my back when I go swimming is I wear a rash guard which also helps from getting sun burnt, you Really don’t want to get sunburnt but especially not where you’ve had surgery! I hope this helps anyone who reads this comment. I also just found this blog via pintrist and while it’s been years since my surgery I am glad to find this because I can relate! So thank you for making this blog and being brave enough to share your story.
Thanks Abby xx
I have scoliosis but have never had surgery as I’m an active person and have never felt the need. I came across this post on Pinterest and I have to say I think it portrays a very negative outlook. I have learnt to love my scoliosis because it makes me stronger. It makes me get up and go to the gym each day- because I know that it will reduce any pain and strengthen my back. No one has ever made any negative comments towards me because of my scoliosis and I have never been paranoid or self conscious about it. I feel that this post gives a very shallow outlook and would not help anyone who has the condition
Hi Kim,
I’m really glad you have learnt to accept your scoliosis and that it makes you go to the gym, that is fantastic 😀 I’m so sorry you feel the post is negative, it is never my intention. I just write honestly about how I feel and about my own experiences of course everyone’s experiences with scoliosis are different. I’m so glad you are doing so well.
Take care, Louise
Hello,
Thank you for sharing what you’re going through and how you feel. It means so much. Beyond getting other’s experiences, knowing that you are not alone with this process feels pretty good. My scoliosis at 49 degree, it diagnosed when I was 14 years old. Now, I’m 24. I am on the stage to decide whether having the surgery. Recently I started to feel the pain, till now it was about being bearable. I will receive physiotherapy then we’ll see where it is going.
Hope the best for everyone who is struggling.
P.s: Totally agree with the back envy part
Omg I used to be like that as a teenager. Now I’m in my late 20’s. I never got back surgery. My curves are both over 90 degrees.. I would never want any guys to rub my back, I would never take my shirt off either.. ever since I found my husband 7 years ago, he had made me realize a lot of people have scoliosis and there’s no need to be ashamed that our bodies are different. Is it a daily struggle with pain? Sure is. But I’m lucky I have a family who understands and helps me get stuff down around the house..
so it gets better, I do yoga and scroth Bc I’m terrified of surgery. I hope all the best for you. And WHO CARES WHAT OTHER PEOPLE SAY!
Hi Elise,
Thank you for your comment 🙂 I’m so glad you feel better about your scoliosis and you are right – who cares what others say?
I am a young looking (so they tell me) 71 year old who has operation envy! I wish it had been available in my day. My curve is 90 degrees and I have a hump, no waistline to speak of and the lowest rib on my right side is touching my pelvis. So to those of you who worry about a scar I say be pleased that you are now growing straight and tall.
I go swimming and no longer hide my back as I did when I was a teenager. If people think anything at all they think how lucky the are not to have a curve.
Good luck to you all.
Unfortunately, I have never come across anyone with a story I can relate to. At age 55 my scoliosis appeared & after 3 years I was almost bedridden. I searched for specialists & finally was told I am not a candidate for surgery. I can’t even find a chiropractor who thinks they could help me. I also have very severe back collapse. It is very painful to even try to stand up. I can’t find anyone who can help me other than my osteopath who has provided some pain relief & has made sure my back hasn’t fused in this crooked bent over position. I can stand up straight after one of his treatments but within 3 or 4 minutes I can’t hold myself up straight anymore. Help !!!
Dear Louise!
Last year when I was 13 years old I did the scoliosis surgery, well passed for lots of things and doctors… Well I live in a small city and here don’t have any orthopedist so I traveled to another city, but I couldn’t do the surgery there, then I changed the city again for another very, very far from my city to find a good doctor. But before I did the surgery it takes 3 years until I find a doctor who I felt confident. When I met my doctor I feel very comfortable with him, so later 5 months I did. Well in the day I was very scared, with fear, but I knew I had to be brave, I didn’t want to showed my parents I was scared, because I knew they will be nervous, so I try very hard to transmit that everything is ok, that I wasn’t scared, but one day later the surgery I couldn’t, I was feeling lots of pain, I wasn’t moving my legs, I was very scared, I wasn’t good I was feeling really bad. But everything passed. When I came to my city, it was still complicated I was feeling pain. Some months ago I was feeling insecurity because I can’t do some things and I wasn’t comfortable with a big scar on my back, but when I read your post and some post comments I feel good because I felt I wasn’t alone. Most people don’t image all the things I passed to stay good today, and I believe you understand me because you passed for something that I passed to, so thank you, you are helping me and other people who will pass for this too.
Sorry for some mistakes I am Brazilian and I’m studying English
Thank you dear!!
Hi Louise,
My name is Laura I’m from Brazil, and I read your post recently and today I decide to write a little about it.
Well I did this surgery when I was 13 years old, and when I did I was terrified because I was just a girl with 13 years old and the doctor said to me that I could died, so I feel lots of insecurity and scary. But I did the surgery and in this year it completes one year of my operation. I was really happy because I never gave up, I always tried to thought in positive things all the time. And when I read you post I feel happy, I hope that you probably knows that you are helping lots of people around the world, it was a very beautiful action. And I decide to write to everyone who is reading this, because you helped me with this, and I hope I am helping some people with this to. Well I need to say that everything will pass, nothing is forever, and believe you’re a champion.
( sorry for my mistakes, I still learn English)
all the best,
Laura
Hi Laura,
Thanks so much for your message – comments like this make me so happy and make writing my blog more worthwhile 🙂
Louise X
Hello, I came across your blog and is great. I am a male 20 years. My scoliosis wasn’t that bad but I just had a chest surgery last year, I had a pectus excavatum. Right now I have a bar in my chest but I get very sad because my scoliosis got worse since my chest surgery. It is 31 degrees. My spine specialist told me that it shouldn’t get worse but I’m scared that it will.
Hello I’m Jemimah and I’m a Nigerian…I’ve had scoliosis for about 3 years now and at the second year I was given a brace..sometimes I feel so insecure people always stare at me funny and sometimes I wish I could just stay at home or in the hospital until my spine straightens…I starting to loose hope that I ever be straight
I do several of these things. I am obsessed with my back so every time I look in a mirror or have a photo taken I look to see if my scoliosis is noticeable. I have been doing this for more than 40 years. I also have back envy. I see woman with beautiful backs and wish my back looked like that. Luckily for me I don’t have the numbness and sensitivity you describe and LOVE massages. I don’t have a problem with people touching my back. But sometimes it hurts when I get hugged to hard. Tight bear hugs press against my rod, and that hurts.
Thanks for your comment, Mary. It’s nice to know I’m not alone in my behaviour!!
Hello, I was diagnosed with scoliosis at the age of 44. I remember I started to have hip pain at 25 but I could walk it off. In my late 30’s my back starting hurting a lot. I had this chair with a high back and I would lay back across the arm and my back would pop and crack. My husband would massage my back and pull on it and it would feel better for a while. I had never heard of scoliosis. I had surgery at 45 and was fused T10 to L5. I had 10 good years and then the pain started again, I had a mushy spot in my lower back. More surgery and fused down to the S1 joint. It did not fuse and the following year 2013 they redid it. It’s going pretty good but it’s easier the younger you are. I am now 64 and have bad knees and a weight problem. If I walk even 12 minutes my thighs go numb. I take a water exercise class 3 days a week which helps tremendously. But with the COVID I am not going right now. It is really hard, the pain is great. Keep moving and keep moving, its the key.
Hi, i’m 18 now i got my spinal fusion when i was 16 and i can relate with everything you said.
We are all warriors, i’m proud of everyone. I wish you the best.
Aw thank you! You too! 🙂
Hi, i was diagnosed at age 7 and wore a brace from age 12 to 17. I became very self conscious about wearing my brace. I had to make the choice surgery/brace. Brace with the possibility of surgery any way. Thank goodness the brace worked. I still have a hump, I also look at it everyday.
Im 48 now almost 49 and I also have pain everyday. Have had since I stopped wearing the brace. Exercise helps especially Pilates. Since Covid hit I haven’t done any pilates and the pain has become so much worse.
I wish there had been a community like this when I was a teenager (late 80’s early 90’s) I wouldn’t have felt so alone.