“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.


  • 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.


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.”


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.



The Pain Cycle of Scoliosis Sufferers

I’ve spent much of my life taking it easy. Not sure what made me learn to do it, but somewhere along the line it just became habit. Not to push myself very hard, not to attempt things that are overly physical, or lift things that are heavy. There have been countless times where I will pull back from something, and somewhere in the back of my head, it feels wrong. I can’t possibly be that fragile, this is stupid to be so careful.

As I got older and had kids, my life went from “let’s take it easy,” to “I’m not gonna deprive these kids of anything just because it hurts me!” But I was also creeping closer to 30 and I realized that I had lived kind of a boring life at times in an attempt to keep from hurting myself. I decided to change things up a bit, to hell with the pain. My life became a cycle of pain and accomplishment that seems never-ending. And as I’ve learned, I’m not even close to being alone in it.

The holidays are an especially easy time for chronic pain sufferers to overdo it. Thanksgiving already beat me down twice. Two different times I pushed myself, did way too much, and then paid dearly for it. I was so frustrated that I did that to myself, twice in a matter of days, and I took to Facebook to vent. Sometimes the only people who truly get it are the ones who suffer the same things you do. And the response I got, was just comment after comment of everyone exclaiming “yes! I do the same thing! Why do we do this to ourselves!”Back-Pain-During-Pregnancy.jpg

And yes, this was a special occasion. You want things to be perfect for the holidays so you go nuts. I get it. I repeated these bad choices for Christmas and a few times since the year new already. But for those of us with confused, curvy spines, it is an absolutely every day thing. I wake up to see what parts of the house are a mess, and if I feel up to it, I go to town cleaning everything I can. At the end of the day I might even feel proud of what I accomplished, but on those days, I pay for it. Because that’s when I need to take a pain reliever just to get to sleep. That’s when I wake up in pain in the morning and everything I do hurts. I get mad at myself for doing too much, and then I’m forced to relax and try to heal, doing only what is required to get through the day. Then while I’m trying to heal, chores build up, anxiety builds, and a day soon comes where I exclaim, “I can’t do this anymore!” I go on another cleaning spree, never actually getting everything done, and again, I have to stop. I might even repeat it the next day, making my already hurting body so much worse. The house will look okay, but I can be found crying on the couch with a heating pad, a massager or a tens unit, popping pain relievers and having another pity party. But I can’t seem to stop doing it.

When you struggle with constant pain, finding a happy medium is either ridiculously difficult, or downright impossible. It’s a choice between staying at a 6 pain wise to attempt to keep up every day (and never actually get everything done), or take care of yourself so you can actually feel okay for a few days, and then just deal with a 9 or 10 for a day or so. You probably get the same amount done, but at least this way you might get a few good days in between. Neither choice is ideal for you or anyone else. It feels like you can’t win.

So if you ever come to my home and I tell you, “Sorry about the mess,” I mean it. I really do hate that I can’t have a Pinterest worthy home. I hate that I can’t seem to keep up in a way that won’t aggravate my husbands OCD. I hate that the simplest things need to be planned out instead of just done.  And I hate that although I’m doing my best, I feel constant guilt that I can’t do more. That I can’t be more, and that my pain holds me back from so much. And that I will continue to do this to myself, over and over again.



Keep the pictures

So I’ve been working on the blog, trying to make it look like a 10 year old didn’t design it, and I wanted to see if I had a good picture of my own that I could use for a header. I decided to click through my photos on Facebook to search. Instead of finding that picture perfect header, it turned into a half hour of clicking through old photos, reminiscing about old times and smiling so much that I’ve given myself a headache.

There was something that I couldn’t help noticing. Through all the pictures I looked through, I remember considering deleting so many of them for the silliest reason. I didn’t think I looked very good. We all want to look good in our own pictures, and I totally get that. But sometimes you’ve got to look wayyyyy past that.

I’ve got old photos of my youth group days and most of those people look so different now. We’ve all grown so much, and honestly, grown into ourselves, and it would be so easy to say, “I didn’t look good in this pic. I’m just gonna delete…”

Don’t do it!

In all those pictures that I was criticizing my own appearance, there were so many other things going on. In some, a friend was in the picture and they had the biggest smile on their face. In others, it brought up memories that I’d never wanna forget. Others still were just awash with nostalgia and impossible to trash. There are even old friends in some that I fell out with years ago, and there might be a bit of resentment there, but looking at those pictures doesn’t bring that up. It only shows how happy we were back then, and looking back helps to soften any hurt feelings that might still be lingering.

There were family members looking great who aren’t so healthy now and don’t smile much anymore. There were old friends who we haven’t seen in years. There were even memories of, “holy crap I forgot that I was ever thin!” And of course, there were the new parent pictures that I kind of hated at the time. I always thought I looked too big, or too tired, too something. But I don’t care anymore.

I’m no supermodel. Most of my pics, new or old, I’ve got a bit of a gut because my scoliosis has taken away my waist. I’m Irish and English and it’s impossible for me to keep a tan, so most of my pics I look like a ghost. Many pics that I wanted to be perfect weren’t because my glasses were broken. I’m extremely unphotogenic and many more photos have me blinking or making an awkward face or, whatever.

But my point, is that despite how I used to feel about my appearance in these pictures, I looked at them today and I smiled. I even got a little teary eyed.

So let this be a lesson. Take the picture with your friends, with your kids. With your spouse! Who cares if you didn’t have time to put makeup on? Or if you think you look tired or you think you need to lose weight first. Life won’t wait for you to put on your makeup. Life won’t wait for you to lose weight or get a tan or look your best. Life is happening, right here, right now, and I intend on capturing it. Makeup or not, sleepy mom eyes or not. My kids wanna look back on pictures and see their mama, and I wanna look back and see us all together. And now, I’ve got a new lifelong resolution.

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