The physical challenges of scoliosis are well documented—yet the emotional impact often goes unnoticed. It’s isolating for those who struggle daily with challenges their friends and family can’t understand.

This is the untold truth about scoliosis.

LIVING WITH SCOLIOSIS: TELLING THE EMOTIONAL STORY

EMOTIONAL AND PSYCHOLOGICAL IMPACT OF SCOLIOSIS

Scoliosis can affect everything from self-esteem and body image to relationships and mental health.

RELATIONSHIPS

BODY IMAGE

of scoliosis patients have difficulty with relationships.34% to 56%

exhibit shyness or isolation. defensively avoid others.

35% 20%more concerned about making friends than their peers.

59% of scoliosis patients express dissatisfaction with their bodies.

45%

more likely than their peers to feel ashamed of their bodies.

Scoliosis patients are

STRESS

of scoliosis patients show signs of emotional stress in their shoulders.

48-52%

SUBSTANCE USE

Boys with scoliosis are

79%

• Feel isolated or depressed.• Spend less time dating and enjoying recreational activities.

Compared to their peers:

EMOTIONAL ISSUES

GETTING HELP

want more opportunities

to do so.

SPEAKING OUT ABOUT SCOLIOSIS

Scoliosis affects everyone differently. These are the stories of people living with the condition—their struggles, pain and courage.

SCOLIOSIS WARRIORS FACEBOOK COMMENTS:

“The hardest part for me is the invisible aspect of it. Whether I'm having a good day or a bad day, I look the same. Even the people closest to me don't understand.”

KATE M.“I wore a brace from the age of 11 to 14. Being ‘different at an age when all you wanted to do was fit in was quite traumatic. Not to mention the ‘mean kids’ who would make fun of me.”

“Enormous fluctuations in highs and lows, paranoia because you feel like you are being judged for being less than sociable. Staying indoors alone so much truly does begin to impact your social skills, creating an endless, vicious cycle.”

AMY N.DENISE C.

“Not being out of pain just wears me down. 24/7 takes its toll on my mind and spirit.”

WANDA B.

“The emotional impact is dealing with chronic pain and not being able to do the things I used to be able to.”

SHELLY V.

“My now-10-year-old daughter has to deal with her mom having back aches all the time, and I sometimes feel like she deserves a mom who is whole, a mom who can run and jump and play more.”

SHELLY V.

I was always self conscious about my shoulder hump under my clothes. A boy at school sometimes made fun of me about my back, which made me feel horrible.

“I've noticed that I tend to overcompensate. I don't want to feel like my back limits me or I'm incapable, so I overdo it a lot.”

HEATHER R.

SOPHIE N.

“Having to ‘miss out’ if the game, concert, church service or performance has hard chairs. Bowing out or letting the rest of the group move on without you at the zoo or the park. Never being able to keep up on walks. Long car/train/plane rides are dreaded.”

KAREN K.

“Being in pain takes a toll on anyone, but when your pain is not well managed, it is physically and emotionally exhausting.”

CLARE R.“Years constantly being on guard around others, wondering if they noticed my scoliosis, trying to hide it.”

MARCE K.

“I have the [same] emotional pain that many others do in that I often feel people think I'm faking on my bad days.”

DEBORAH S.

“Not being able to express the pain!”

ROBIN W.

“It weighs on your emotions. It put me into a deep depression, hiding from the world in my bedroom, just trying to deal with all the pain. My daughter deserves better. She deserves me taking care of her instead of her taking care of me.”

DONNA S.

“People don't understand not only the daily pain, but the embarrassment of being crooked.”

KELLI R.

“Knowing that sitting for long periods triggers stiffness and pain in my lower back and hips gives me second thoughts about travel and participating in activities that require travel, a pastime I once pursued and thoroughly enjoyed. Scoliosis, and the pain that so often accompanies it, is life-altering.”

JOYCE W.

“The pain—how your back being tired makes the rest of your body tired. Plus, the insecurity of your body not looking like it ‘should’— constantly correcting yourself to look ‘normal.’”

LISA H.

“Besides the pain of sitting or standing too long, it's the uncertainty of how much worse your curve will continue to [progress]. Sadly, admitting to the shame and frustration of a physical deformity that makes me feel more and more unattractive. Inside and out, uncomfortable with myself.”

ROBIN K.

“The scars on my body are nothing compared to the emotional scars that scoliosis [has] left on me.”

LEAH L.

“Every time I look in the mirror, I hate the way my body looks crooked; it makes me feel inadequate and I wish that I could just be ‘normal.’”

GENEVIEVE T.

“It weighs on your emotions. It put me into a deep depression, hiding from the world in my bedroom, just trying to deal with all the pain. My daughter deserves better. She deserves me taking care of her instead of her taking care of me.”

DONNA S.

“I go for mind over matter with my emotions and focus on what I know are my truths – I am a strong, independent woman; I’m loyal, I’m kind, I’m a dedicated employee, I’m a good mother, and I’m not going to be a victim.”

LORIE R.

JENN R.

“It was tough getting diagnosed at the age of 14. As a teenager, it [felt] like I was alone… damaged… embarrassed. I have managed to persevere; [to] overcome these thoughts and feelings and move on.”

RENEE M.

“Scoliosis is affecting a person as a whole, not just a spine. Everyone experiences and is affected in different forms. Everyone is built differently, therefore everyone copes differently.”

ANONYMOUS

“Trying to make others understand when you can't keep up with what they're doing, even when you want to. Trying to make them understand you can't bend this way or stretch that way due to a fusion.”

“Feeling like I can't do [what] I used to as I am getting older, and it is so frustrating that I am depressed because of it. Everyday tasks and activities become a chore for [those of] us who suffer with scoliosis.”

JAMIE B.

DIANA M.

“”

“People constantly make fun of me because of the hump on my back, instead of asking what happened. Sometimes it leads to self harm and suicidal thoughts.

MADDIE S. ”

“ The emotional toll of scoliosis is not only for the warrior, it’s for the parent and grandparents who desperately try to help. The very worst is that scoliosis, for the most part, is invisible and misunderstood. ”

“People don’t realize just how much scoliosis affects daily life for those who live with it. There are times when I have to stop working or driving to calm my body down and the spasms and I cry out in pain before I can continue.”

JACLYN C.

“I hate being told, ‘stand up straight’ or ‘don’t slouch.’ I can’t help it. I also hate that my whole right side is different. I always feel so self-conscious.”

ELLA C.

“It affects me 24 hours a day, seven days a week.”JOANNA B.

“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 R.

THE MIGHTY COMMENTS:

“Your life just becomes this

constant struggle of being even and

aesthetically pleasing. Nobody

wants to be ‘the girl with the humpback.’”

CHELSEA E.

“It’s more than just a back ache.”ALANNA R.

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

HANNAH H.

“We’re not making excuses for not being able to do things.”ALISHA M.

“It doesn’t only change the way you look; it changes the way you feel about yourself.”

SANDRA L.

“No two people are identical in their scoliosis journeys.”AMANDA D.

“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.”

LAUREN H.

“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.”

AMANDA B.

“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 S.

“My mother’s strength was demonstrated as she took me to appointments and listened to the details of surgery. My mother advocated and protected me through the entire process. Now a mother myself, I can’t imagine the fear and anxiety she must have been feeling.”

ANGELA

“From a caretaker’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.”

PAUL L.

“Taking one day at a time, having faith and believing in miracles is what it’s about! I definitely think it's harder for the momma.”

AMANDA G.

“I use my scoliosis for good. It's my motivator to workout and eat clean every single day, and to help others overcome their obstacles, get healthy and feel good, too.”

AMY N.

“Family and close friends who demonstrate compassionate kindness are the healing balm, along with the understanding that this too shall pass.”

LEAH L.

“It's amazing in this age with social media—we can help others daily with support and letting them know they're not alone, they're not the only ones dealing with struggles. There is strength in numbers.”

RENEE M.

“As a mother of a daughter with

scoliosis, I was in denial after seeing

her x-rays for the first time. I bawled … I felt

guilty because it was inherited. After my

pity party, we chose to remain positive

and we continue to deal with this head

on. She’s a true scoliosis warrior and

I am forever in awe of her strength.”

“Scoliosis does not define me.”

RENEE M.

“I am grateful for my scoliosis because I am more empathetic and compassionate to those who have chronic pain. My perspective is to keep moving and keep smiling!”

PAT R.

BRIDGET T.

Only 5% of scoliosis patients feel able to discuss their feelings with health professionals. 90%

of scoliosis patients express feelings of emptiness.

Compared to their peers:

Boys with scoliosis are 10 times more likely to think about suicide.

Girls with scoliosis are 55% more likely to think about suicide.

10x 55%

Girls with scoliosis are

3 times more likely to consume alcohol.

Boys with scoliosis consume

94% more alcohol.

SPEAKING OUT ABOUT SCOLIOSIS

25% to 43% of teens with scoliosis:

SOURCES: oandp.org, scoliosisjournal.biomedcentral.com, aboutkidshealth.ca, ncbi.nlm.nih.gov, link.springer.com, ncbi.nlm.nih.gov, themighty.com

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