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22 Truths People With Scoliosis Wish Others Understood

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An estimated six to nine million people in the United States live with scoliosis. The condition, which causes abnormal curving in the spine, is often overlooked and mistaken for common back pain. But if not treated early, scoliosis can cause lifelong pain, decreased mobility and, in more severe cases, decreased organ function.

The Mighty wanted to learn more about the often misunderstood condition, so we reached out to ScoliSMART, an organization dedicated to informing the public about scoliosis and the need to find better treatment. The group asked its readers on Facebook and its Scoliosis Warriors Discussion Group page to share one thing they wish others understood about scoliosis.

This is what we learned:

1. “People don’t realize just how much scoliosis affects daily life for those who live with it. No one sees it for what it is: a disability. There are times when I have to stop working or driving to calm my body and the spasms and I cry out in pain before I can continue.” — Jaclyn Christine 

2. “I hate being told, ‘Stand up straight’ or ‘Don’t slouch.’ I can’t help it. It will progress for the worse with time. I also hate that my whole right side is different. I always feel so self conscious.” — Ella Clolèry

"I hate being told, ‘Stand up straight' or ‘Don't slouch.' I can't help it."

3. “Every day can be so different from the last. It’s not just the level of pain. It can occur  in different parts of the back, legs, etc. day to day. It can prevent you from doing the most basic tasks, like putting socks on, washing your hair or simply trying to get comfortable. Also, making plans well in advance is not always an option due to not knowing on the day how one is going to be feeling. Most of all, I would like everyone to know what scoliosis is and how it can affect those with it in different ways depending on the degree.” — Paul Lyndon

4. “From a carer’s point of view, it’s so frustrating when there’s nothing you can do to help ease the pain of the person you’re caring for, apart from just being there for them. It’s about time scoliosis was better publicized in the mainstream media on a regular basis.” — Paul Lyndon

5. “It’s not just a crooked back for me; it’s one hip that sticks way out. I’m constantly worrying about how crooked I look in every piece of clothing I own. It’s having a stomach that sticks way out because my back curves in. It’s not being able to walk up or down hills straight because my legs are an uneven length. It’s about being so sore at the end of the day all I want to do is lie down… but I can’t even be comfortable doing that. But most people just think, ‘Oh, its just a little curved spine.’” — Tifani Nichols

6. “It affects me 24 hours a day, seven days a week.” — Joanna Bullock 

"It affects me 24 hours a day, seven days a week." — Joanna Bullock

7. “The constant pain, the lack of ability to do certain activities, the emotional and psychological stress we endure on a daily basis. This isn’t something you can simply stretch out or ‘deal with.’” — Andrea Richardson 

8. “No two people are identical in their scoliosis journeys.” — Amanda Elaine DuPage

9. “Bras don’t fit right, shirts don’t fit right, pictures where you have your back to the camera are to be deleted, burned and never see the light of day. Your life revolves around what feels comfortable (slouching and uneven shoulders) and what will benefit you in the long run (good posture). Finding a hairdresser who not only knows you have it but also knows you need those few extra seconds to ‘adjust’ in the mirror so you don’t wind up with an uneven cut because they’re using your shoulders as a guide. Your life just becomes this constant struggle of being even and aesthetically pleasing. Nobody wants to be ‘the girl with the humpback.’” — Chelsea Ellis

10. “It’s more than just a backache.” — Alanna Randall

"It's more than just a backache." — Alanna Randall

11. “Something as simple as a sneeze or hitting a pothole can throw my entire back into a spasm or pop my ribs out of alignment. Activities with impact like running and aerobics are totally out of the question.” — Rachel VanRinsum 

12. “I can’t stand up straight no matter how much I want to, because [my spine] isn’t straight. [It] has three curves.” — Julie Jones

13. “The pain isn’t caused by ‘sleeping on it wrong.’” — Susan Burkheimer

"The pain isn't caused by 'sleeping on it wrong.'" — Susan Burkheimer

14. “When I outwardly express any pain, that means  it’s already at the point that I can already hardly bear it.” — Hannah Hippensteel 

15. “Scoliosis is more than not looking normal. I’m a mother of two. I try my hardest to do things regular moms do, but it’s hard. I get tired easy, my back starts hurting during the smallest activities, but still I push through the pain to do as much as I can. I’m not lazy. My house is dirty, but it’s because I don’t have the strength and stamina to get everything done at once.” — Amanda Blake 

16. “No I don’t stick my butt out on purpose to get attention — my lower back has an exaggerated arch. Deal with it.” — Hattie Rose Pacheco

17. “It’s a physical condition, but the emotional toll can be so much worse. People may not notice your curve or rib hump, but just because they don’t see it doesn’t mean you aren’t thinking and worrying about it constantly. Scoliosis and depression can go hand in hand. It can just crush a young girl’s self-esteem. It’s not just about the physical condition.” — Lauren Higginson

“It's a physical condition, but the emotional toll can be so much worse.” — Lauren Higginson

18. “Scoliosis does not define me.” — Bridget Brandon Thompson

19. “We’re not just making excuses for not being able to do things.” — Alisha Marusa

20. “It doesn’t only change the way you look, it changes the way you feel about yourself.” — Sandra Marie Lacy

21. “To show my husband what it’s like to have scoliosis, I once took a plastic straw, stood it upright and tried to push straight down. It took some force to smash it. Now that straw has a crease in it, kind of like my back. When I tried standing it up again, it smashed much easier. That’s the additional force I have to contend with every day. It takes that much more energy for me to just stand up and do normal tasks. That doesn’t mean I’m broken and can’t do those things, but it just takes some extra work.” — Nicole Lynam

22. “Just because my hips don’t match on the same level and my back looks different from yours doesn’t mean I’m any less beautiful.” — Karen Ashley Stansbury

“Just because my hips don't match on the same level and my back looks different from yours doesn't mean I'm any less beautiful.” — Karen Ashley Stansbury

*Some responses have been shortened and edited.

To learn more about scoliosis and connect with others who are living with the condition, visit the ScoliSMART website.

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Originally published: June 27, 2015
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