Scoliosis and Mental Health: My Story

Scoliosis and Mental Health

It’s World Mental Health Day on 10th October, which got me thinking about how scoliosis has impacted my own mental health.

What many people don’t realise, is that scoliosis is more than a back condition. Depending on severity and location of curve(s), scoliosis can cause physical deformity, pain, neurological issues, breathing, digestive problems, and more. It is also a chronic condition, meaning it cannot be cured and it can also be progressive in severe cases.

All this is not to say that many people with scoliosis live an active and “normal” life. However, the symptoms associated with the condition can, in some cases, trigger mental health issues, such as anxiety, stress and depression. These are symptoms that are not often talked about in association with scoliosis. Personally, I think that scoliosis can massively impact mental health and the risk factors should be spoken about more.

This post has been quite difficult to write, but reflects my own experiences with scoliosis and how I feel that is has affected my mental health.


How has scoliosis affected my mental health?

Low Self-Esteem and Body Image

This is a big topic for me and could have a blog post all on it’s own. Having scoliosis has massively affected my self-esteem over the years.

My scoliosis was/is classed as severe, which means I have a physical deformity. By the time of diagnosis (age 13/14), I had developed a large “rib bulge” on my back from my ribcage curving and twisting. This was not just uncomfortable but, as a young girl, it made me paranoid about how I looked.

I honestly hated myself back then and spent a lot of my teenage years crying in my room and covering myself up in baggy clothes. It makes me so sad to think back to how I was and how low I felt about myself.

Over the years, these feelings got worse and affected my behaviour in many ways. I would avoid activities and clothing where my back was on show. I would angle myself in photographs and when I spoke to people, so that my “rib bulge” wasn’t visible. I became constantly paranoid that people were staring at my back, even if they just glanced my way. I also became obsessed with looking at other people’s backs and feeling jealous. I used to call myself ugly and a freak of nature. I know now that this isn’t true but that’s how I felt as a teenage girl. I was different and I hated it.

Today, I feel much better about myself and have learned to embrace my body. It’s taken 20 years, but I’m now finally proud of my scoliosis and the person it’s helped me to become. I still feel self conscious sometimes but I will wear the bikini or tight top anyway, as I now care less about what people think. However, that negative self talk as a teenager has had a lasting impact on me as an adult. The feelings of low self worth and confidence follow me around. I constantly think that I’m not good enough and feel paranoid and uncomfortable with people seeing/touching my back and body.


Anxiety and Stress

Having scoliosis has caused me an IMMENSE amount of stress and anxiety over the years. This was more the case just after diagnosis and my early 20s, when I was faced with the agonising decision over whether to have scoliosis surgery or not.

When I was initially diagnosed, it was overwhelming and a massive shock. I was told my scoliosis was severe and that I would benefit from spinal surgery. If I didn’t have surgery, there was a risk that it could progress over time, causing further pain and deformity. If I did, there were obvious risks and I convinced myself I would be paralysed or even die (albeit these risks are small). Imagine having this on your shoulders at age 14? I panicked and thought that my life was over. I remember crying in my room for days after this.

Due to various reasons, I didn’t have the surgery until I was 24 but I had regular checkups. I spent a lot of my time upset and worrying that my scoliosis was getting worse, as well as feeling anxious about the future. Would I be able to do normal things? Would I end up in a wheelchair? These are the thoughts that went through my head.

The lead up to the surgery was the most stressful time of my life so far. I was worried whether I was doing the right thing and the risks associated with such major surgery. I was terrified. It was all I thought about, it consumed me. Anxiety manifested into physical symptoms such as ectopic heart beats/palpations, obsessive behaviours, and insomnia.

Post surgery, my anxiety continued. For months and years following my surgery, I took daily photographs of my back and studied them, anxious that my spine was moving whilst it was fusing. I also compared my back and x-rays to those of others who’d had the surgery, convinced that my correction was not as good. This became an unhealthy obsession of mine. I was also in a lot of pain and discomfort during the recovery, which was tough mentally. At the time, I worried I’d never feel normal again.

My anxiety around my scoliosis is much better now. 10 years post surgery, I know that my spine is fused and cannot move. It doesn’t stop me worrying about the future though and potential pain and problems I may face. I already have back pain and neurological symptoms, which seem to be progressing. Whilst I don’t let my scoliosis stop me from doing anything, it is always there in the back of my mind.


Depression

At the time, I didn’t realise it but looking back, I was definitely suffering with depression following my diagnosis. My parents were unsure about such major surgery and so I entered a “watch and wait” phase where my scoliosis was monitored in yearly check ups. I felt hopeless during this phase, like I was in limbo. Everything I did, my scoliosis hung over me. I felt like I couldn’t progress with life or truly be happy. I was constantly worrying that it was progressing, or that it would progress in the future. I also felt down at the prospect of living with my scoliosis for life.

I tried to have a normal life, got a boyfriend, went to University, but I wasn’t happy. Instead of talking about it, I isolated myself from everyone. I spent long nights in my room searching the Internet for answers, reading others’ stories and researching the surgery. I missed out on many things that normal young people do, as I was so down and obsessed about my back that I didn’t want to do anything. After several years, I started getting muscle spasms and bad back pain. I was only 21 at the time. I remember clearly thinking, that I would rather die than live how I was. It sounds morbid and dramatic but at the time, that is truly how I felt. Looking back, I probably needed help to be honest. I hated myself, I was in pain and I didn’t want to be here anymore.

That’s when I realised, that things needed to change. I decided to find a surgeon and go for the surgery. It was a risk, but I felt that if the surgery went wrong, at least I’d tried to help myself as I wasn’t happy how I was.

Luckily for me, the surgery was a success. It helped my pain and corrected the majority of my deformity. Now, you really cannot tell I have scoliosis unless you look very closely and know what you are looking for. My depression did continue post surgery for a while. Mainly due to the pain of the recovery and not being able to do a lot for 6-12 months or so. I also had to come to terms with the fact that, whilst I’d had a fantastic result, I wasn’t 100% straight and “normal” and never would be. This took a while to accept and I did feel down for a while.

My scoliosis still impacts my behaviour years later, which I think shows that surgery can not always “fix” the psychological symptoms. Today, I am happy with the results and I’m glad I went through the surgery. The whole experience was tough physically and mentally, but I feel that it put me in a better place overall and in many ways, saved my life.

I still get back pain, nerve issues and I feel uncomfortable most of the time. I guess that’s the nature of my condition. It’s important to realise though that everyone’s scoliosis is different, some people may have chronic pain and others may barely be affected.

I do worry about the future sometimes. If the pain is bad on a particular day, then it does make me feel low as I know that I have to live it, it won’t go away. However, at least I now know that the curve(s) can’t get any worse, which provides some comfort. The surgery is not a “quick fix” or a cure, but it really did improve my quality of life.


Isolation

When I was first diagnosed, I felt very alone. I had never heard of the condition and I didn’t know anyone with it. I felt like I had no-one to talk to, or who could understand what I was going through. I didn’t tell anyone about my scoliosis for a long time, as I was ashamed. I know now that I should have spoken to people and sought help but at the time, that’s how I dealt with it.

Over time, I started opening up a bit to close friends. When I was in my early 20’s, I joined a scoliosis support forum and spoke with people in similar situations, some of whom I’m still friends with today. There’s a lot to be said to reaching out and this helped me to feel normal again, and like I wasn’t alone. This is so important for scoliosis and mental health. It’s partly why I created this blog, so that others with scoliosis know they are not alone.

In many ways, it’s easier now with technology, social media and the Internet being so accessible. It wasn’t the same when I was 14. It was difficult to connect with others and find information on my condition. The downside to this though, is that there is a lot of incorrect information about scoliosis out there, which can fuel anxiety further in those with the condition. It’s important to understand that you can’t trust everything you read online and to use reliable sources such as your own Dr and sites like the Scoliosis Association.


Whilst these are my own experiences with scoliosis and mental health, it certainly doesn’t mean that everyone with scoliosis will struggle in these ways. I just wanted to highlight that there is often a lot more to scoliosis than back pain. The condition can certainly impact mental health, as is often the case with any condition that causes chronic pain.

If you have scoliosis, I’d be interested to hear how it has affected your own mental health? Remember, the pain of yesterday, is the strength of today.

The pain of yesterday, is the strength of today. Quote Graphic.

Let me know your own experiences in the comments below. 🙂

Please follow me on Instagram and Subscribe to my YouTube channel!

Take care,

Louise X


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Scoliosis and Mental Health

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5 thoughts on “Scoliosis and Mental Health: My Story

  1. I suffer from severe scoliosis and too deal with depression. I’ve had two surgeries and will eventually have to face a third. I get so very tired of people looking at me strangely when I’m out in public because I walk crooked. My self-esteem has plummeted over the past few years because of my appearance. Thank you for sharing this blog and reminding me that I’m not alone. “My deformity does not define me.”

  2. WOW that was really powerful Louise I am now 72 and the emotional pain has to be worse than the physical. It leaves dreadful scars that sometimes you are not aware of until a situation arises and you feel like you’ve been hit by a bus. Just simple things, but you realise just how long you have carried this rubbish inside you
    My story began in the 60’s as a 13 year old but it’s a very long one. My degree Of bend was 110 so quite severe. No op just kept myself really fit and my spine strong, but I just wanted to say thank you for expressing the mental pain that this disease creates and for which there needs to be more awareness and help. Good Luck on your journey guys stay strong ❤️

    1. Hi Chris,

      Thanks for reading my blog and for taking the time to comment. The emotional pain of scoliosis for me is often far worse than the physical pain so I can relate to how you feel. Your scoliosis sounds very severe, I do feel for you. I hope you are not in too much pain and are getting the support you need. Stay strong.

      Louise

      1. Thank you Louise for your kind thoughts. I have a decision to make re an op to release a few nerves that are trapped, it’s a scary thought at my age but it’s live with the pain and being unable to walk too far or trust the Dr. I think I will trust him as I’ve got a few years left in me yet. Take care xx

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