“My curve is bigger than yours” and other nonsense stigmas of scoliosis

Support. No matter what you may be struggling with; mental illness, disability, chronic pain, parenting, there’s a support group for everything. When things get tough and there’s nowhere else to turn to vent, a support group centered around your specific struggle seems like a good idea. You expect empathy, understanding and comfort. Maybe even some helpful advice from people who have already been there. But sometimes, that’s not what you get.

It’s no secret that I’ve got a few issues. But I’ve noticed a big difference in the way people act within each group. With mental health issues, sufferers are quick to speak up and help someone in need. They immediately offer support, empathy and patience. They offer advice on diet, what meds to try, what kind of doctor to see. There’s no jealousy, just a bunch of people who are in pain and want to help someone else who is in pain. Most of the time anyway.

But it seems to go a bit differently when the pain is physical. I can’t speak for other chronic pain conditions, mostly because I only write about what I know, so in this instance I’m talking about scoliosis. And it is amazing to see how careless people can be. From the second someone is diagnosed, there are a million things to learn and figure out. What do you do about it? Get a brace? Have surgery? Pain medication? Physical therapy? Nothing? There are so many ways to go about it and everyone has their own opinion that they believe is right.

But scoliosis is not like a broken bone. You don’t just set it and move on with your life. Every single case is different than another, and even every individuals circumstance changes through time. I wanted to take a look at some of the ridiculous myths and stigmas surrounding scoliosis, and clear them up the best I can. And remember, everyone’s experience is different. Just because it didn’t happen to you… You get it.

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  • Everyone has some form of scoliosis.

No. Everyone has some sort of curvature to their spines, yes, because our spines are not meant to be pin straight. There is supposed to be a slight curve at the neck, and there’s a nice, soft curve along your back that allows for the best movement and function. But curve does not mean scoliosis in this way. Scoliosis is when your spine curves to the side in a way it isn’t supposed to. When people say that “everyone” has scoliosis, what they really mean is that it is common.

And common does not mean it’s not a big deal. While it is definitely a common thing, most people who have it have small curves that don’t affect their life in a negative way. Most of those people will go through life with very minimal problems and it may never get much worse. There are plenty that have no idea they have scoliosis because it’s never caused them pain. Comparing those people to someone like me is where the problem is.

  •  Scoliosis does not cause pain.

I cannot tell you how much this makes my blood boil. It is truly disgusting how many people are told by professionals that scoliosis does not cause pain and that they must be doing something wrong. I have been hurting since I was four years old, and if any doctor tried telling me it had nothing to do with my scoliosis, he’d quickly find his name plastered all over the internet with his idiocy. Anyone that I’ve ever showed my Xrays to has a reaction of, “ouch! That must hurt so much!” I don’t get why so many doctors can’t understand such a simple fact.

  • A small curve isn’t a big deal.

Wrong again. Although yes, a small curve has the potential to be no big deal, every person is different. You can have two people diagnosed with a 10 degree curve in puberty, and one may grow up with no problems and only have slight pain when they get older. Meanwhile, the other will get worse, and that 10 degree curve can progress until it’s past 50 and surgery is recommended. You can’t predict how it may or may not progress so no matter how small, it is important to keep an eye on your spine if you’ve got any degree of scoliosis.

  • The larger the curve(s), the more pain you will have.

It is honestly amazing how misunderstood this one is, especially in the actual scoliosis community! Someone will come in looking for some support, post a picture of their most recent Xray and say that they are in pain. And you would not believe how many people will respond, basically with, “My curve is bigger so I’m in more pain than you.” Of course, most of the time no one says those exact words. But it’s implied. People with smaller curves get no sympathy at all, and people with large, scary looking curves get enthusiastic praise for being “so strong” and all the empathy in the world for the pain they’re going through. But I’ve lost count of how many times someone with a more severe curve than me will admit that they don’t hurt that much.

Pain doesn’t radiate at an equal rate of bigger curve=more pain. It depends on your lifestyle, your diet, your exact curve, your muscle definition, so many things! For some of us with double curves, one curve is sitting on top of the other, so even though it may be “worse” than other people, it means that instead of leaning to the side or standing up crooked, we still stand up relatively straight. And sometimes that means less pain than you’d imagine.

  • You MUST get a brace/surgery/chiropractic care.

Again this is one of those things that differs with each case. In many cases, chiropractors can help with pain enough that the person doesn’t feel they need any further treatment. In other cases, like mine, the chiropractor can be nothing but a hindrance to proper care.

Same goes for braces. Some people swear by them, some say they’re a waste of time and effort. Many studies have shown that they help prevent scoliosis from progressing, and even straighten out the curve a bit. But many others have shown that people who were braced tend to experience the same amount of problems further down the line, and need surgery just as often as those who were never braced. But these studies are still comparing completely different people with different builds, lifestyles and activity levels. It’s difficult to compare results when the subjects are so different.

And surgery. Too many people tend to think that surgery should always be done if the spine is not straight. But in fact, surgery is not always the best option. If someone’s curves are not causing them any pain, or very little pain, it’s not always the best choice. It’s easy to look at an x-ray of a scoliosis sufferer and assume they need to straighten out their spine. But in reality, many of us get through life just fine without any major interventions. Spinal fusions are no doubt life changing surgeries but they don’t usually last. Most people who go through a spinal fusion need an extra surgery at some point to fix hardware, to remove hardware, or replace it with upgraded stuff. Some people get lucky and get 10-15 years of lessened pain and feeling well until they need more intervention. But there are many cases where screws pop out, rods come undone or the body rejects a piece somewhere. It’s not an easy thing to go through and shouldn’t be done for vanity or taken lightly.

  • Scoliosis is just about your back.

Scoliosis may be a condition of the spine, but it affects all of you. A curved spine can lead to many issues that at first glance seem to be unrelated. It can affect your posture(obvious one), your breathing, balance, mental health, and add pain in countless areas. It can cause pinched nerves, lead to degenerative disks, arthritis and bone loss. It can affect your stomach and cause gastrointestinal issues. It has even been known to cause infertility in some cases. Don’t underestimate how much your spine affects your wellbeing and the workings of your entire body.

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I’m sure there are plenty more things to go on about but no one wants to go through that much. The moral of it all is this: Don’t assume you know anything about what someone else is going through. I’ve dealt with scoliosis my whole life. I’ve been in pain since I was 4 years old. I dropped out of countless extracurriculars and struggled through school with bad gym grades and a horrible self esteem. I’ve got chronic pain, and I developed osteoarthritis in my spine at only 25 years old. And through the support groups that I do turn to once in a while, I’ve seen so many stories similar to mine, yet so many more that are much different. I’ve seen people with larger, scarier looking curves swear that it doesn’t cause them much pain and that they are thankful they never went through with surgery. And I’ve seen younger people, like me, with milder looking curves who seem to be having a much more difficult time than me.

So you know what? If you tell me you are in pain, I will believe you. I don’t care if your curve is 5 degrees or 95. If it hurts, it hurts. Because what hurts more is when you try to turn somewhere like a support group and all you get is doubt. When I go into a forum about mental health and say that I’m struggling, no one asks to see proof from a psychiatrist that I’ve got a real diagnosis. No one compares how long I’ve been suffering to how long they have. Yet with scoliosis, it’s “How big is your curve? Show a pic of your xray. Oh, my curve is much worse it can’t be that bad.”

No.

In the end we are all struggling, some of us a little and some of us more than anyone can imagine. I’ve chosen to take the high road and be kind and supportive to anyone who needs it. I’ve chosen to ignore my basic thought of, “well my back is much worse,” and instead reply with, “have you tried turmeric/heating pads/tens units/etc?” Support should be encouragement, advice when and if it’s appropriate, and empathy. Let’s try to make a change. No more putting people down because they didn’t follow the same line of treatment that you swear by. No more comparing issues to win at this ridiculous game of who is in more pain. No more questioning hurting people for no reason. We are all in this together folks, let’s step it up and handle it together.

We may be bent, twisted and curvy but we are never broken.

 

 

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