23 Things People with Scoliosis Wish You Knew

Scoliosis is a condition that affects two to three percent of the population, or an estimated seven million people in the United States, according to the National Scoliosis Foundation (NSF). One of these people is Gelcys Castaneda, 38, of Orlando, who has had severe scoliosis with a double curve since childhood. Over the years she’s had three spinal fusion surgeries with additional surgery to remove hardware from her spine.

“I suffer from chronic pain from scoliosis every single day of my life but I refuse to let it stop me from reaching my goals,” she says. “I am a marathon runner and during mile 17 of the New York City marathon, my ribs broke. The twisting of my spine rotates my ribs, putting constant pressure on them, and the extra stress from running actually caused them to fracture. Anyone who has ever broken a rib knows how excruciating that pain is. But I kept running and yes, I finished. One of my proudest moments ever!”

What exactly is scoliosis?

According to David Siambanes, DO, orthopedic surgeon, director of the Children’s Scoliosis Center at St. Joseph’s Children’s Hospital in Tampa, with scoliosis, a person’s spine is curved and twisted. “It typically looks like an ‘S’ or ‘C’ curve on an x-ray but it’s actually a complex three-dimensional deformity,” explains Siambanes, who was the president of the spine section of the American Osteopathic Academy of Orthopedics. There are three broad types of scoliosis, based on the amount of curvature: 10 to 20 degrees is mild, 25 to 40 degrees is moderate, and anything over 50 degrees is classified as severe. Some curving of the spine—anything less than 10 degrees—is considered normal.

What are the symptoms or signs of scoliosis?

Elevated shoulder blades, uneven hips, a lopsided or elevated waist, uneven breasts, and leaning to one side are all common symptoms of scoliosis, Siambanes says. He adds that you may also see a rib prominence, or “hump,” when the person bends forward. (This is why most pediatric well-child visits include having the child reach towards the floor, the doctor isn’t testing flexibility.) Pain may or may not be a symptom, particularly in children, so it’s often spotted during a routine exam.

What causes scoliosis?

“In most cases, scoliosis is idiopathic, meaning that it happens for no apparent reason,” Simbanes says. However, occasionally it can happen as the result of an illness, birth defect (such as cerebral palsy), or a malformation of part of the spine during gestation, and that is called congenital scoliosis, he says.

Scoliosis can be present from birth, but it most commonly arises between 10 and 15 years old, as the child goes through a growth spurt, he says. It occurs equally among both genders but girls are eight times more likely to progress to a curve magnitude that requires treatment, according to the NSF.

How scoliosis is treated

The vast majority of cases are considered mild and don’t require any treatment beyond monitoring to make sure the condition doesn’t worsen, Simbanes says. However, about 30 percent will need a brace—either rigid or flexible—for some period of time and 10 percent will need surgery to correct it, according to the NSF. (Learn more about scoliosis treatment options.)

Courtesy Gelcys Castaneda

What people with scoliosis wish others understood

Scoliosis is often “hidden” which can cause a lot of extra pain and inconvenience for sufferers. “Just because you physically can’t see our condition doesn’t mean that we aren’t struggling, aren’t in pain, and aren’t uncomfortable,” says Sammy S., 23, of Fort Meyers, Florida. Want to help? Here’s what people with scoliosis want everyone to understand:

Scoliosis not just “a back thing”

If there’s one thing that every person we interviewed said they wish others understood it’s that scoliosis isn’t just a back problem. Because your spine supports your whole body, it’s common for scoliosis to lead to other long-term health issues and chronic pain. “I have two bulging discs, vertigo, migraines, and insomnia, all directly related to my scoliosis,” says Jeanie H., 60, of Logan, Utah. “It’s definitely not ‘just a back thing.'”

Scoliosis has nothing to do with age

Nothing is more frustrating than having someone discount your pain or your experience. “My biggest pet peeve is when I tell people my back is killing me and they respond, ‘You’re too young to have back pain!’,” Sammy says. “Then I have to explain to people that while I’m only 23 years old I got diagnosed with scoliosis back when I was in 7th grade so I’ve been dealing with this for a while.”

(Find the best mattress for scoliosis to help alleviate back pain.)

Don’t comment on my body

One symptom of Sammy’s scoliosis is uneven shoulders, with the left being noticeably lower than the right. “It’s frustrating when people look at it and point it out, I know I have it and it just makes me self-conscious,” she says. “It even caused some bullying when I was in high school.” You (hopefully) wouldn’t point out someone’s buck teeth or giant zit so don’t comment on this aspect of their appearance either, especially since it’s not something they can change.

MJTH/ShutterstockExercise is medicine for scoliosis

Yoga or weight lifting may be one way you burn off steam and stay healthy but for people with scoliosis it’s a medical necessity, Sammy says. “Doing yoga helps stretch my back and takes some of the pain away,” she says. “It’s also helped me to learn to be more comfortable in my own skin.”

Scoliosis exhausting

The pain from scoliosis can be chronic and chronic pain can make you chronically exhausted. “I have scoliosis and people don’t understand just how tired it can make you,” says Laura D., 31, of Burnsville, Minnesota. “And when you’re that tired, every single thing in your life feels harder.”

Grocery shopping is a serious challenge

You may not realize how much you rely on your back when you go grocery shopping but it’s involved in everything from helping to stabilize the cart to picking up heavy things off low shelves to twisting to open a door—all tasks made exponentially more difficult with scoliosis, Laura says. “I’m always having to ask workers or even other customers for help because I can’t lift heavy things or reach high over my head,” she explains. “Oh, and buying in bulk really isn’t an option for me.”

Car rides can be agonizing with scoliosis

Scoliosis can make it difficult to find a comfortable position when sitting and the small confines of a car make it even harder, Laura says. “On car rides, I have to get out every hour or so and walk around so it ends up taking a lot longer to get anywhere,” she says. “Then, I know that when we get there I’m going to be in a lot of pain so I’ll need extra rest. It really dampens the fun on vacation.”

Scoliosis makes romance trickier (but not impossible)

When one person has a chronic health condition, their partner may find themselves more often in a caretaker role rather than a romantic one. “This had a big impact on my relationship and my husband and I have had to work extra hard to keep the romantic part of life,” Laura says. “It affects our relationship physically, emotionally, and practically, that can lead to resentment on both sides if we’re not careful. It’s all about communication.”

Sex can be hit or miss

Sex is another activity that relies heavily on your back which means that certain positions or acts may be off the table for those with severe scoliosis. “I’m a strong, active guy and I’ve had previous romantic partners actually mock me for the precautions I have to take,” says Matt P., 41, of Minneapolis. “But they really have no idea how much it flipping hurts even to even roll over in bed to kiss them goodnight!”

When I say I can’t do something, believe me

“People sometimes have a hard time understanding that when I say I can’t do something it’s not that I’m being stubborn, it’s that I literally can’t do it,” says Artemis S., 12, of Baltimore. “This is a problem a lot with my gym teachers. They think I should be able to ‘push through it’ but if I try and do it anyhow then I’ll be in a lot of pain.”

Kolostock/Getty ImagesJust because you can’t see my scoliosis doesn’t mean I don’t have it

Artemis says that an issue she faces a lot is people simply not believing her. “I look basically normal so they think I’m lying or making it up,” she says. “But, like, I’m not going to lift up my shirt to prove it to you.” When she’s wearing her brace this is less of a problem, she adds.

Sometimes I’m just fine

Scoliosis pain can vary widely from one day to the next and triggers can be unpredictable. “Some days it hurts all the time, some days it doesn’t hurt at all and I forget I even have it,” Artemis says. “But my parents act like it’s bad all the time and I have to tell them to back off. When I can do stuff, I want to do stuff!” Tennis, swimming, and slack-lining are all “stuff” the middle-schooler loves to do when she can.

Your definition of “easy” isn’t the same as mine

Even little motions, like picking up a bag, turning to reach a lamp switch, or rolling over in bed require significant involvement from your back, says Matt. “It’s so frustrating to me that things like picking my son up, or getting a pencil I dropped on the floor, or reaching for the gear shift on my motorcycle all are unique challenges,” he says. “What we think of as simple movements are really quite complex, I always have to consider the safest way to do something before I make a move.”

Scoliosis changes how I dress

Those “grandma” elastic-waist pants, loose tops, and slip-on shoes aren’t a choice so much as a necessity, says Cheri G., 40, of Boulder County, Colorado, who suffers from chronic migraines, fibromyalgia, and impinged nerves in her spine from years of scoliosis. “I used to love fashion and picking out outfits but the chronic pain makes getting dressed feel like a chore,” she says. Now she says she feels limited to things that are easy to slip on and don’t require a lot of twisting or bending over. “Oh, and you can forget about high heels!”

Don’t shame me for needing a lot of breaks

Walking is one of those things that people with healthy backs really take for granted. “I wish people would understand that yes we need breaks when we walk for long periods of time,” Sammy says. “It may be frustrating for them but even a five-minute rest can make a huge difference in my pain levels.” It may still be worth it to try, pain relief is one of the health benefits of walking.

njaj/ShutterstockAmusement parks aren’t very amusing

“Anything that puts pressure or pulls on my body, pulls on my spine too, causing pain,” says Leo P., 22, of Los Angeles. “One of the worst days of my life was going on my senior class trip to discover that roller coasters make my back seize up and spasm like no other. Also found out the hard way that trampolines are permanently off the fun list.”

Scoliosis can change your career path

Chronic conditions, like scoliosis, can have a big impact on whether or not sufferers can work and what type of work they can do. “I can’t sit for eight hours a day. I can’t stand for eight hours a day. I can’t do anything for eight hours a day,” Leo says. “College, a career, kids, all of it seems out of reach right now.”

Ice and a Tylenol aren’t going to cut the pain of scoliosis

When it comes to managing the pain from scoliosis, it can go far beyond basic home care. “I wish people understood that it’s not a backache that can be fixed with an ice pack or a little massage,” says April C., 40, of Lake Forest, California. “I literally can’t walk when it’s acting up, my body decides my back can’t handle the strain of walking so when I put my foot down my legs crumple.” She says she uses a blend of essential oils and a heating pad along with prescription muscle relaxants to deal with the pain.

I’m happy to answer your questions

Questioning strangers about their health is rude, but if you have a loved one with scoliosis, chances are they’d love to help educate you about the condition and what they need, April says. “I don’t mind answering questions or sharing how it affects my life,” she says. “The more people who understand this condition and can be compassionate about it, the better.”

Scoliosis really ups the difficulty of parenting

Scoliosis can greatly impact a person’s ability to parent, starting with the process of giving birth. “I have a son and his birth was extremely hard because I couldn’t get an epidural (pain medication injected into the space inside the spine) due to my twisted spine,” Gelcys says. It can also make it difficult to lift and hold infants and children, bend over to pick up toys, take them in and out of the bath, sprint after a toddler, and many other normal parenting duties.

Sometimes nothing helps and that’s okay

When a loved one is hurting, it’s normal to want to “fix it,” but with scoliosis, sometimes there’s nothing you can do. “When your spine is off, it unbalances your whole body. Everything hurts from my feet to my skull. Pain meds don’t help, better posture doesn’t help, laying down doesn’t help, most exercise doesn’t help,” says Kerri S., 32, of Emmett, Idaho. At these times the best thing to do is to ask if they’d prefer you to keep them company or give them some space. Unsolicited health advice—think “if you’d just try this diet!”—is never appreciated, she adds.

I’m not lazy

Sitting as often as possible is one of the few things that helps prevent Kerri’s back pain but, she says, it sometimes draws negative comments. “I wish people could understand that I don’t sit because I’m lazy, I sit because my entire body is tense and in pain,” she says.