Scoliosis and Body Autonomy: How to Advocate for Yourself
Today, we’re going to talk about body autonomy and what it means for individuals with scoliosis. This has always been a very important topic to me, but in the last few weeks, I’ve seen a lot of things that made me want to address this issue as soon as possible.
I’ve got a few stories and some tangible tips on supporting and protecting your body — and advocating for yourself. And if you’re a healthcare provider, I hope this episode gives you a little insight into some of the things your patients experience that you may not have considered.
H2: Scoliosis and Body Autonomy: What Does It Mean?
What does “body autonomy” even mean? Essentially, it’s the right to make choices about your own body, including physical movement and medical decisions. It covers everything from your freedom of choice in how you dress and present yourself, to your right to make your own medical decisions. Body autonomy also covers the right to be free from mental or physical coercion from others.
Unfortunately, too many scoliosis patients experience pushback on the idea of bodily autonomy. These challenges to our autonomy may come from treatment “suggestions” that are presented as requirements or from healthcare professionals not accepting your personal preferences or limitations. No matter the circumstance, having your bodily autonomy threatened can be extremely frustrating and even traumatizing.
H3: Bracing
One really common example of this issue revolves around bracing as a scoliosis correction tool. Many individuals are essentially given an ultimatum and told that they must wear an uncomfortable brace or risk additional health issues or surgery down the road.
Regardless of the medical arguments for bracing, it can be very traumatizing for anyone to be told that they don’t have a choice whether to wear something that’s uncomfortable and obvious to external observers. For many individuals, especially young people, wearing a brace impacts their self-esteem [link to clothing episode], and feeling like they don’t have a choice in the matter makes things worse.
H3: Pain denial
Have you ever had a doctor or healthcare provider tell you that your scoliosis pain isn’t real? It’s extremely frustrating and isolating to hear that “scoliosis shouldn’t be painful,” especially when you are experiencing pain from your condition.
Telling someone that their experiences aren’t real is dehumanizing, but it’s unfortunately something that healthcare professionals tell scoliosis patients often. When a doctor denies your experience, it’s akin to them telling you that you don’t have a right to express your pain. And it can even make you question your own feelings, especially if you don’t have any interactions with other scoliosis patients with similar pain and experiences.
H3: Restrictions
Another way that scoliosis patients lose their body autonomy is through activity restrictions. They have doctors or coaches or other healthcare professionals tell them what they can and cannot do with their scoliosis.
The problem is that those statements aren’t based on the individual. For example, if you have a doctor tell you that you can’t do something (that you know you can do) just because they have a book or research article as their source, it can make you feel like your reality doesn’t matter.
And sometimes the doctor may be right in recommending against a certain activity. But even in that case, you are still experiencing a loss of body autonomy based on your condition.
Finding exercise and movement that works for you and helps you feel strong is something that all of us should have the ability to do.
H2: Advocating for Yourself
How can you advocate for yourself and protect your bodily autonomy? By speaking up! It’s often very difficult, especially for “people-pleasers” who prefer to avoid conflict at all costs. But advocating for yourself is important, even if it doesn’t have the outcome you want.
H3: Sometimes people don’t listen
One of my friends (and clients) had an experience recently that showed how dangerous it can be when healthcare professionals refuse to listen to their patients. This friend has scoliosis and also has a connective tissue disorder called Marfan syndrome.
Because this disorder runs in her family, she’s spent lots of time researching and expanding her knowledge to manage her own care. However, she frequently deals with healthcare professionals who completely refuse to acknowledge her experiences and her deep understanding of relevant medical research.
My friend was recently at an urgent care clinic for a severe ear infection, and the healthcare provider told her which medication would be prescribed. It’s a drug that has documented (potentially fatal) interactions with Marfan syndrome, and my client explained this and requested a different medication.
The nurse practitioner simply refused to listen. They gave my friend a lot of pushback on the research and data that she presented about potential drug interactions. In the end, the nurse practitioner refused to prescribe a different medication!
It’s a frustrating and scary story, and watching one of my friends experience it is heartbreaking. It was a perfect example of medical professionals taking away someone’s body autonomy by refusing to listen and acknowledge that person’s experience.
My friend is recovering from her ear infection and feeling better. But that doesn't lessen the depth of mistreatment she experienced in this situation.
H3: But sometimes, they do!
My friend’s story isn’t the only recent experience that has inspired me to record this episode. I also experienced this issue recently in my own life.
I got to tag along with my husband on a work trip, and during the trip, I scheduled a massage. I’ve lived with my scoliosis for a long time, and I know exactly what works for me (and what doesn’t) during a massage. For example, I don’t like a lot of pressure pushing down into my concavities, and I prefer upward pressure from my hips to my shoulders (instead of the other direction).
In the past, I would have just not said anything and dealt with the discomfort. But this time, I spoke up and let my massage therapist know about my preferences. I pointed out my prominences and told the therapist that these issues were from my scoliosis, not tight muscles. The deepest deep tissue massage won’t fix my rotated spine!
I’m a people-pleaser by nature, and it’s often very difficult to speak up, especially when it might cause conflict. But I’m proud that I advocated for myself, and in this particular instance, it worked! The massage therapist listened to me and gave me a wonderful massage based on my preferences.
During the same trip, I also took two different Pilates classes. In both cases, I told the instructor beforehand about my scoliosis and let them know that I would be modifying things when necessary. One instructor was wonderful and fully supportive. The other one didn’t listen and continued to push the “correct” exercises even when they were uncomfortable. And of course, the class with the supportive instructor was so much better than the other one!
H2: Tips to Be Your Best Advocate
As I’ve been thinking about this topic and reviewing some of my own experiences and those of my friends and clients, I’ve come up with a few tips that I think can help us protect our body autonomy:
Become an expert in your condition: Learn as much as you can about scoliosis, treatment options, and exercises that work well for you (check out this episode for more details).
Understand your personal dos and don’ts: You are the best expert on your body, so listen to it! Don’t be afraid to speak up or modify things for yourself, even if it’s an exercise recommended by your scoliosis specialist!
Practice using your voice: It’s often hard to stand up for yourself (trust me, I know!), but it does get easier with practice. The more you speak up, the easier it gets. Start with small things, like asking for a pillow when sitting on a friend’s couch. If you get used to doing that, it gets easier to speak up in harder situations, like with your doctor.
I think one of the most important things to remember when it comes to your body autonomy is that you are the expert on your own body, and you have the right to make decisions for yourself.
H2: Protecting Your Bodily Autonomy
All these recent experiences have really reminded me how important it is to be educated on your condition and willing to speak up for yourself. Unfortunately, there will still be cases when people are unwilling to listen and continue to try to take that autonomy away from you. But hopefully, the more we all continue to advocate for ourselves, the more people will start to take us seriously.
I’m very passionate about helping people with scoliosis have a better experience in their life, and that’s why issues like this are so important to me. I hope this episode has helped you feel more confident in advocating for yourself.
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