What those of us with scoliosis want you to know.

 

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In honor of scoliosis awareness month I decided to drop in on the scoliosis Facebook community. These people are such a loving group, so supportive and caring of each other in a way that I don’t see in many other places. This is where we go to vent about our pains, our struggles and our surgeries. We commiserate together because there, we know there are people who get it. What scoliosis really is. And so, we wanted to share with our friends and our family what we really go through. Here’s the feedback I received:

 

“Parents should take heed when their children are diagnosed. Mine put their heads in the sand about my condition and part of my future was robbed from me because my scoliosis wasn’t a big concern to them until my school nurse reported them. I credit my nurse for saving my life. I hated her at the time. I was the freak that got called down to the nurses office every day for a year just because she wanted to know if my parents brought me to the doctor yet. Looking back, I’m ever so grateful to her and I wish I knew how to find her to say thank you. So, if the school nurse from Northport Middle School in Port St. Lucie, Florida, circa 1996/1997 is reading this; I owe you my life and I’m grateful to you every day.”  -Shelly L.

 

“I hate my scoliosis because I wanted to serve in the US military more than anything else. I was disqualified for service due to my spinal fusion. Three of my grandparents served. I was absolutely heartbroken when 9/11 happened and I couldn’t help. I knew beforehand that I wouldn’t be able to but going to war made it so much harder to accept. I’ve got the heart of a soldier and a useless back to go with it.”  -Shelly L. (same as above)
“I want everyone to know that even older adults can have surgery for scoliosis. I lived most of my productive adult life with a moderate case that became painful and it progressed after age 50. My family doctor told me I was too old for surgery and to just take pain relievers and exercise. I was even discouraged by a neurosurgeon. I did my own research and found a scoliosis orthopedic specialist who performed surgery on me April 20th for severe 80/76 scoliosis and kyphosis. I am a lot straighter and recovering well. Healthy patients of any age can benefit from surgery if indicated! I suffered several extra years because of misinformation.”  -Nancy M.
“I think people don’t understand how significant scoliosis messes with your head. Even if you don’t have a lot of pain or limitations, it’s still difficult to find clothes that fit. It took me a few years to realize that I wasn’t just putting on weight and getting out of shape. My curves were progressing, which led to depression, which made me slack on being active, which led to lack of muscle tone, which let the curve progress. At age 60, with an upper curve of 70+, I’m struggling to get my conditioning back, but I will do it. Keeping up the positive self talk is imperative!”  -Diana H.

 

“One thing I want everyone around me to know is that this stays with you regardless of whether you feel a lot of pain or very little pain. Every morning when I wake up, it’s me and 30-some pieces of titanium pieces getting out of bed. When I try on clothes at the store, it’s really my scoliosis, my protruding shoulder blade and uneven back and hips trying them on. When I lie down flat on the ground, there’s a part of my body that doesn’t touch the ground at all. There are big things to deal with, like back pain so bad that after driving for more than an hour, I become stiff and have to lie down and rest before continuing my day. And of course the frequent thought of wishing I could have a straight, healthy spine, and I rub pain relief cream on my aching shoulders and neck. But there are many little things too. It’s not simply “back pain” or “having a bad back”. It is so much more than that. It’s a scar trailing from my neck to lower back that shows I’m different. I have something different. And it isn’t just about the titanium; it’s about my relationship with my body, what I have been forced to accept about myself. I want my family to know that my story continues every day. My surgery was thirteen years ago, but I am still that young girl who tried every day to look in the mirror and make peace with what she saw.”  -Anna B.

 

“I wish my loved ones knew that I wish I could do some of the fun things with them and not have to stop, or decline an invitation. I wish I could play in the grass or on the floor with my nieces without being uncomfortable. And that even though I may have a smile on my face, I am writhing in pain on the inside.”  -Melanie E.
“Many years ago I was traveling through Europe and had stopped for a Turkish bath in Turkey. I was being massaged by a woman who was chattering nonstop in a language I didn’t understand. Suddenly all the other Turkish ladies laughed at the same time. I asked her what she had said, and she replied “baby camel”and pointed at my back. I was horrified and very embarrassed. One good thing came of it though, I was always super conscious of my posture after that, which has helped my discomfort over the years, both physical and emotional.”  -Penny C.
“I have kyphosis between my shoulders, a 70 degree curve. I am 57. No doctor ever found my scoliosis when I was in school. It’s strange because I was pigeon toed and wore corrective shoes. I’ve always wondered why this happened to me. My rib cage is off center, my bones are asymmetrical and now I struggle with severe back pain. I have advanced arthritis in my left knee and foot. I ask, “why me?” The pain I experience has severely affected my life.”  -R.S.

It’s amazing how so many people with the same condition could have such different experiences. I can relate to the pain, the struggle, the low self esteem. I remember growing up I always doubted myself. When I was in pain, I was made to believe that I was too young to be in pain, therefore there must be something else going on. I doubted everything about myself. Through years of struggling through sports that I couldn’t handle, I became more and more defeated until I just gave up.  Scoliosis screenings in school were traumatizing, being forced to bend down for a test for a condition I already had proof that I had! I was the only one in school with scoliosis and that one week of the screening, everyone knew it. I was a freak.

As I got older, I remember clothes not fitting me right. If a shirt was too tight, it would show off my protruding shoulder blade. If it was too loose, it would slip off one shoulder and expose how uneven I was. Bathing suits have always been hell. Picture day was always super fun too.

“Sit up straight please.”

“I am.”

“No, you’re not. Sit up STRAIGHT please.”

“I AM!”

The more years went by, the worse my back was. I attempted to go through that stage you find in your 20’s, where you say, “screw the world, I am who I am and I’m proud of it!” But I was lying to myself. I hated my back. I hated being twisted and crooked. I hated always knowing that I was the freak in the group.

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I thought I was sitting up straight for this picture. BTW I was with a great friend who has never told me to “sit up straight”   😉

Now I’m an adult. A wife, a mother and a homemaker. I’d love to say that I’ve gotten past hating my body, but I haven’t. I could get all dressed up and feel like I look amazing, and the mirror might even agree, until someone takes a candid picture of me. Every time I see a picture of myself I cringe. I’ve been told that my condition isn’t obvious, but I don’t know if everyone I’ve ever met is blind, or if I’m truly the only one who notices the way my shoulders slump way too far forward. Or how if you take a side pic of me, you can see the enormous hump in my back from my ribcage sticking out. I can’t be the only one who sees my uneven shoulders, my crooked hips, the way I will be sitting comfortably, hunched over, and then shoot up out of nowhere because I just realized that I probably look like the Hunchback of Notre Dam. When I brush my teeth or pick something up, I stand on one foot and lean sideways a bit instead of just bending over straight.

 

With my kids, things got worse. When they were babies, I couldn’t respond to invites until I was sure I had help. When my son had colic, I spent the first 6 months of his life sobbing through the night because I was in so much pain from rocking him. As they got older, the more time went on, the more it hurt to get on the floor and lean over to change diapers. Even now, when they rarely need to be picked up, I feel like all I do is disappoint them.

“Sorry guys, we can’t go to park today. Mommy is in too much pain.”

“Guys no jumping on Mommy today.”

“No babe, mommy can’t play like that right now. I’m sorry mommy doesn’t feel good.”

And all I can think is “I’m sorry you don’t have a better mommy. A healthy mommy. I’m sorry I can’t do these things for you.”

My most recent x-ray.

I’ve got to say, after almost 7 years of marriage, my husband has never seemed bothered by my scoliosis. He teases about it once in a while, because he knows humor gets me through pretty much anything. But I still feel like I disappoint him too. I feel like I am incapable of keeping an actual clean house. I can handle only so much before my back is screaming in pain and I have to sit down. Cleaning hurts. Hauling laundry up and down stairs hurts. Making beds, doing dishes, cooking. Everything you could possibly imagine hurts. And yet, I’m used to it.

But here’s the biggest thing that’s got to me about my condition. Having kids destroyed my back. I always thought I’d have a brood of crazy kids running around. I wanted to be that mom who stayed at home, baked cookies, and raised 5 or 6 amazing kids while taking care of her husband and being an all around freaking Stepford mom. Without the creepiness of course. But I can’t. After one, my health declined. After the second, it plummeted. And my body just can’t handle any more. My spine has developed arthritis, my back is weak and ligaments are loose. My doctor didn’t even understand how I managed to have the two and strongly discouraged ever having another baby ever again. Plus, I desperately need surgery and no doctor will perform that serious of a surgery on a mother with two young kids.

So for anyone who previously thought scoliosis was just a “bad back”, this is what we go through. The embarrassment, the pain, the deflated self esteem and the anger. We’re a bit sick of telling people that we ARE sitting up straight. We understand that scoliosis is quite common, but the ones who have tiny curves and no problems cannot compare to those of us with severe curves, with back braces, or titanium rods and screws in our spines. We don’t want to hear how we need to “just exercise more” or how we should just get the surgery and then we’ll be cured. Surgery is not a cure. It’s a band-aid on a bullet hole. In almost every case, the person who had surgery will need to have another down the road. The pain will come back, and the spine might start to curve again, sometimes in a spot that’s not fused. We are sick of making excuses instead of telling the truth about our pain, because we know people won’t understand.

But I’ll tell you one thing, if you are supportive to anyone with scoliosis, you are a precious gift to them. If you let them vent without trying to give advice, you are priceless. We need back rubs, heating pads, and a shoulder to cry on once in a while. Because, after all we’ve suffered through, we may be bent, but we are never broken. After all, we must be some sort of super heroes with a giant S carved into our spines.

 

One thought on “What those of us with scoliosis want you to know.

  1. I’m holding back tears reading this. I have minor scoliosis that was found in my adult years. I hadn’t thought about the multitude of physical challenges/ailments I’ve lived with as being so connected, but I suppose they are. Flat feet, bunions, uneven hips and shoulders, vertebrae that won’t stay put (though gaining muscle does help some), and years of chronic neck pain.

    I don’t tear up about that. It’s my 21 year old son that I want to cry for. He was diagnosed with scoliosis as a teen and as he ages, it is visibly more pronounced. He, too, tries to excercise to build muscle in hopes of better holding his spine. At his young age, I think he has more physical pain than I do, though he rarely mentions it. I see it in his stretch and the grimace that accompanies his movement.

    Thank you so much for sharing your experience and those of others. It is helpful to know what someone with this struggle might be thinking in the day to day; and to know too, what well meaning words might actually rub the wrong way.

    God bless,
    Heather

    Like

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