Comments on: Guest Post: Sex and Scoliosis

By: D

Thu, 18 Mar 2010 09:31:10 +0000

Interesting to hear your perspective.
I wore a brace for one year durning middle school and it was nothing short of terrible. I had to wear it twenty three hours a day. I did not tell any of my friends and avoided conversation with my siblings about it until hight school when I decided to stop wearing the brace and going to the doctor. My curve was than 30 degrees.
I am a first year in college and am a distance runner. Within the last six months I have been experiencing extreme back pain. My self-image has been affected, allowing my friends to call me “square body” or “short torso syndrome” because I do not have a waist. I get made fun of for being figety (which is hard to explain to others that I am constantly moving because I am never comfortable)
But, the point is that I finally faced my fears and went back to a doctor and was told that my curvature is 58 degrees. I am planning on getting spinal fusion done in May.
I am fearful of surgery. But, this is life and what I must do.
Best of luck and hope your curvature does not worsen.

By: hsofia

hsofia — Wed, 27 Jan 2010 07:48:57 +0000

Thank you for this post. I feel like it was a good introduction for someone like me. I first heard of scoliosis when I was about 12, and read the young adult novel, Deenie. It made a strong impression on me. Years later, I learned a little more about scoliosis because one of my favorite actors, Sarah Polley, has it. (I believe she’s had surgery for it.) The pictures you shared were very helpful. I never understood what scoliosis might look like – and now I think I’ve probably seen many people who have it, and simply never knew. The stories about negative school experiences (both in comments and in the article) are just heart breaking to me. My parents pulled me out of school in 7th grade (age 12) in part because they thought I’d have a hard time with peers and peer pressure. Sometimes I rue that decision; sometimes I think it was best for me when I hear about the cruelties folks suffered in middle and high school.

By: Eb

Eb — Wed, 27 Jan 2010 00:00:53 +0000

Thanks for posting this. I don’t feel so alone anymore. I have been told that my back was disgusting by a family member when she saw me in a bikini. I will never forget that comment for as long as i live. I think about my 30 degree curve at least once a week. Buying clothes can be a nightmare and sometimes the anger when i see myself in the mirror of the fitting rooms nearly brings me to tears. I hope others are coping better than me. I know 30 degrees isn’t so bad but it’s ruined any confidence i once had and now i’m dreading menopause.

By: Alexis

Alexis — Sat, 05 Dec 2009 05:57:25 +0000

Thank you for posting this. There’s a great deal here I didn’t know myself – including the bit about progression occurring again at menopause. Now I’ll know to watch that and seek treatment when the time comes.

My scoliosis wasn’t diagnosed until after puberty, when I started to wear more fitted clothes and my mom noticed the unevenness of my waist and hips. It was something I’d noticed long before, but I’d simply assumed it was what women’s hips did and actually liked the way each hip had its own unique curve. (Still do, come to think of it, though it’s easy to forget how much I like it now that I’ve learned to associate it with my scoliosis.)

Looking back now, I honestly can’t say whether I’d rather have learned about it earlier, when there was still time to do something about it. It’s difficult to weigh the possible benefits of bracing against the stigma associated with spinal deformities and, in the event of having to wear a brace to school, essentially outing myself to my peers as someone with a physical abnormality at an age when kids are cruel and self-image is a delicate thing. It never occurred to me until now that it’s symptomatic of an ableist society that it isn’t an easy call.

By: yan:yan

yan:yan — Fri, 04 Dec 2009 03:22:33 +0000

wow, how inspirational you are! ^^
during middle school and high school, i’ve held my self-esteem down. scoliosis is not just a physical condition, but also emotional. but, rather than suppressing my emotions, i began to accept, realize, and embrace it. and the only way i can is through dance. I love the uniquenness of my back as much i love dance. scoliosis is me. Not ugly at all. \(^^)/ *empowering!!!

By: Lexin

Lexin — Mon, 16 Nov 2009 14:37:58 +0000

Thank you for this post, it puts into perspective what my mother went through…my mother has a degree of scoliosis (she’s now 85) and had to make various decisions about her treatment over the years. She never went into any detail about them, I think feeling that they were hers to make – which I totally respect.

Eventually she decided she’d prefer not to be ‘messed about with’ and, while disabled from other causes (she has diabetes, ischemic heart disease, arthritis in just about every joint to the point where she can barely walk and cataracts) she manages to live alone in her own home with care provided every day by the local authorities. (She’s in the UK.)

By: Bene

Bene — Mon, 16 Nov 2009 11:02:57 +0000

Another thank you for this post and for sharing so much–I was aware of scoliosis and some of the treatment process (my cousin has it), but I’ve learned quite a bit.

By: MK

MK — Sun, 15 Nov 2009 20:32:22 +0000

Thank you for this. I have had scoliosis for as long as I can remember. It was a very minor issue until my early 20s, when the background pain, which had previously been like white noise, turned into a front and center shrieking pain. I very rarely talked about the pain up until recently, because I felt like talking about it meant complaining, and I felt like I had no right to complain. Partly because “someone always has it worse” and partly because at some point in my life I assumed pretty much everyone had constant pain, they just didn’t talk about it because it was of so little importance. I’m not sure why I got this idea, but it’s still strange to me to imagine that there are people who don’t live in pain. In my experience, it seems typical that women experience pain and suffer silently, though I can’t remember anyone ever teaching me this.

Since seeing the sway of my spine lit up from behind (this past summer), I have become hyper-aware of my scoliosis and how it affects me. I had never had an x-ray of my back before, had never had tangible evidence that there was something wrong. For me, that x-ray gave my pain a sense of validity. I wonder why the pain itself wasn’t valid enough.

By: C.L.

C.L. — Sun, 15 Nov 2009 02:18:43 +0000

Thank you so much for writing this! I don’t have much to say because I’m so overwhelmed — you’ve written so many of the things I’ve thought over and over in my own head.

By: atlasien

atlasien — Sat, 14 Nov 2009 23:28:22 +0000

Thanks for the kind words and thanks to everyone for sharing their stories.

One thing I forgot to mention in the post is that I’ve found a good resource in the forums at scoliosis.org. There are a lot of people there asking questions like “is it time for me to get surgery?” “should I get surgery?” “does X treatment actually work?” and a lot of other people answering them.