Scoliosis Stories:
On this page I have several stories featured that have been sent into me via instagram or email. Feel free to send your story into me at @fortheloveofnailz or [email protected].
These following stories have been created answering the questions below, if you submit your story please answer the following questions, as they are specific to my project research.
1. what degree is your scoliosis/is it s shaped or c
2. How old were you when diagnosed? did you wear a brace? (for how long) did you need surgery? etc.. your basic 'scoliosis story' here please
3. If you wore a brace how did you find it? did it affect you in any way in terms of your mental outlook? did it change your identity maybe slightly? did it in anyway affect your relationships with friends/parents? like did they become more supportive and understanding etc.. like how did your relationships with people change in anyway?
4. if you had surgery- answer the same questions as above?
5. what tips would you give for others with scoliosis?
6. do any people you personally know also have scoliosis (friends/family etc) if so how many?
7. had you ever heard of scoliosis before you were diagnosed?
8. how were you diagnosed?
9. does your school do annual testing for scoliosis?
19. which country do you live in?
Rosie's Story-
1: My 3 curves make an S shape and the degrees are: 15, 27, and 42
2: I had been getting pain since I was 7 but I was only officially diagnosed when I was 10/11 (14 now)
I wore my brace twice. I started wearing it in 6th but I had to stop after a few months because it ended up giving me a major hip problem due to the pressure. At that point not wearing the brace was okay even though I was in excruciating pain because my curves still weren't that bad. However due to insurance issues we failed to keep close watch on my back and only noticed in 8th that my curve had drastically increased and that I needed to be braced again immediately. I have now had my second brace for around 9 months and I am expected to wear it 24/7 even to bed. (I would also like to mention that the brace isn't designed to make the curve or the pain better, it is only designed to hopefully stop the curve from increasing and in my case it made the pain much worse)
I have been trying to get the surgery but my doctors are reluctant too, because they only base the surgery off of the curve, not the pain level. And even though my pain has been increasing steadily everyday for years, my curve still is the tiniest bit under what they recommend for the surgery.
3: To find the brace we had to go through many many specialists and appointments and it is a very long and tedious process, that can take months (I would also like to note that my braces cost $1000 each)
The mental idea with scoliosis and the brace are very challenging for many reasons. With my personal experience I have felt my back was ugly and deformed for years, backed up with some people comments of "ew what's wrong with your back" and "cripple" I was too self conscience to wear anything open backed, or a swim suit at all. The brace complicates things even more, it limits your moments extremely and is very bulky and noticeable. When I wear it in public everybody, and I mean everybody stares. It is a very uncomfortable feeling and I wish there was something I could do about it.
Yes, I would say my identity changed, I am a scoliosis fighter, and no one can truly understand what I go through on a daily bases even if I tried to explain it in detail for a whole year, no one can know how much pain and sadness and fear and rejection this has caused me.
Unfortunately I would say not very much, my friends are better about it than my parents are. For example whenever we are out together I have to sit and rest constantly due to the pain, and I can't carry anything more than one pound without extreme extra discomfort. I remember my friends helping me with my stuff at school sometimes. My parents aren't that helpful, they do care I guess but they really don't help me out.
4: haven't had the surgery
5: My tips to you: if you suspect you may have scoliosis or you have any back pain in general (especially if you are my age/younger) make your parents get you an appointment and X-rays and don't stop asking until they do, or until you know what's going on with your body. The worst thing you can do is wait.
6: Unfortunately I don't know anyone with scoliosis which has made this journey even more difficult because I had never seen or knew anything about it beforehand
7: No I don't believe I had, so it was quite dramatic for me
8: I was diagnosed by specialists I had been referred to go see by my doctor
9: No. No one even knew it was a thing in my grade until I told them about it. My school is completely uneducated about it, even some of my teachers were clueless.
10: California, USA
11: My pain level is hard to describe because after living in pain for some long I have a much higher tolerance them most people. So my 2 could be someone else's 6. But even on my standard I am in 8/9 pain 24/7
My pain isn't only limited to my back, it's goes through into my arms and legs and head. I get both muscle pain and nerve pain. I can't walk for more than 10 minutes, and I can't stand for more than 20 tops. It makes me uncomfortable every second of the day 24/7. There isn't one second that I forget the pain. It makes it almost impossible to sleep, and when I do, sometimes I wake up crying. It gives me migraines and makes me sick to my stomach as well. Also no matter what I do the pain always increases throughout the day. Now you might ask, what about medication? What about therapy? I have tried every medication I am allowed to have, going up to severe narcotics such as hydrocodone, which can have very unfortunate side affects. I have done normal therapy and special pain therapy for both body and mind at Stanford Hospital.....nothing has worked or even really helped. If I had to give a few words about how my pain makes me feel I would say: drained, discouraged, helpless, trapped and anguished.....just off the top of my head. Triggers. Everything is a trigger for me. Eating, standing, sitting, lying down, moving....everything makes it worse in some way.
I would also like to add one other thing about how scoliosis has affected my life.
I was a high level gymnast, in an program for early/young Olympians, I am a state, regional, and national champion and many events and was already being looked at for scholarships....gymnastics was my life, and I went everyday up to 40 hours a week to further my training, even with my pain. It was my life as my dream. The reason I say was, is because scoliosis took it away from me. I was headed places and now instead of flipping and twisting on a beam, I can barely stand or do anything without gasping for breath because of how intolerable and excruciating the pain is.
It has also affected my school work, it is damn near impossible to focus on anything with this level of pain and my grades suffered from it noticeably along with my behavior in class.
I would also like to say how sad it is that very few people take this seriously as a real disabling diagnoses....now I'm not saying scoliosis will ruin your life, this is just my personal story with one or two of my many struggles with it. Everyday is a fight. Stay strong everybody!
Aurelie's Story:
1) my scoliosis was 15-18 degrees before (i can't remember and neither can my parents so hopefully i can get back to you on that) and went down to 5 degrees which was extremely lucky considering that wearing a back brace isn't usually meant to make your scoliosis decrease, but usually keeps it from increasing. My scoliosis was s shaped
2) I was first diagnosed when I was 11 but my doctor had just told me to keep an eye out on my back as it wasn't straight. Then that summer I moves to switzerland and was then again told by a doctor that my scoliosis was increasing. I had 2 xrays, each 6 months apart and my doctor decided to have me wear a night brace. So when I was 12, at the start of seventh grade, I started wearing my brace. I wore it only at night which for 2 years and 7 months. Over that time period i have missed only 8 nights of not wearing it. I was super serious about wearing my brace and it really payed off because I didn't wear it for long. Oh and by the way, the reason why I had to wear my brace for so long (remember cause you always thought i wore it for ages) is because I had a scoliosis directly linked with my growing. So i had to keep wearing it until my main growth spurt was over. I am 1.67 meters and will only grow up to 1.70 so my main growth spurt is over.
3) wearing a brace at the start of my treatment was like hell on earth. I felt extremely claustrophobic in it and I hated being "caged up" as i called it. The first 2 weeks were horrible, I couldn't sleep well and it bothered me so much. I feel like i was kind of traumatized (this does sound dramatic but thats how i felt - the first time i had to wear my brace i was crying hysterically, anyways it was horrible i remember screaming to my mom that it was torture 😁😁) Afterwards it was fine though, it actually became weird not sleeping with it. I remember one time i woke up at 2 am and couldn't sleep until I remembered I wasn't wearing it. My identity didn't change with my brace, I think mainly because I didn't have to wear it during the day so i didn't feel restrained from doing anything that I did before or being looked at differently from some people. I think my parents really helped with me wearing my brace every single night because they really pushed me to do it, especially at the start when I was so scared of wearing it. My close friends were also understanding and would always listen to me when I had anything to say about it. I had one friend though (you!) who also wore a brace and I felt we had that connection because we were the only ones who could really understand what it was like.
4) I did not have surgery which I thank my doctor for because of his early diagnosis.
5) for other people with scoliosis - don't let it change you, or change what you do. If you let yourself get depressed because of a brace, then you're going to waste your teenage years. I had a friend (hey its you again!) who wore a brace during the day and i remember being so surprised by how she dealt with it. Had I been in her place, I would have been embarrassed and never would I still be so outgoing, acting as though the brace didn't bother me from doing anything. So congrats to her (you) for trying to still remain positive. If you can manage to do that, then the brace will not seem so bad anymore.
6) I have one friend with severe scoliosis who wore a day and night brace however now she only wears a night brace (is that right??). My aunt (mom's side but by marriage) also had scoliosis when she was young and had it very severe. She wore a day and night brace for 3 years. My dad also has irregular scapula (those two bones at the top of your back). One sticks out more than the other. He never got treated though. And my sister has irregular shoulders (one is slightly lower than the other) and she is being followed at the moment to see if she will need to be treated (however the doctors don't think she will need to be).
7) i don't really remember but not really, all I knew was that you could get back problems (because my mom would always correct me on my bad posture before I got diagnosed)
8) i was diagnosed by my pediatrician in the United States when I was doing the regular "bend down and touch your toes" and "walk in a straight line on your toes and then heels" part of a doctor's examination
9) nope 😁 they probably should though because many people probably have it but haven't been diagnosed properly or early enough
10) I live in France and that is where I am being treated at the moment.
Sydney's Story:
@Polishdreamer's story: