7 Mistakes I Made When I was First Diagnosed with Scoliosis

Lonely young latina woman sitting on bed. Depressed hispanic girl at home, looking away with sad expression.

This blog post is all about the mistakes I made when I was first diagnosed with scoliosis. Can you relate to any of these? Let me know in the comments.

Isolating myself

The first and major mistake I made when I was first diagnosed with scoliosis was isolating myself.

I didn’t tell anyone about my scoliosis for a long time. I used to spend most nights alone in my room feeling pretty down and upset about myself.

If you have recently been diagnosed with scoliosis, please don’t do this. It’s so important to surround yourself with others and to talk about your feelings, which are so valid.

Feeling ashamed

When I was first diagnosed with scoliosis, I truly HATED myself. I hated my back. I hated how it looked. I felt different to everyone else. It was a difficult thing to go through as a teenager. This has led to huge self esteem issues, even now as an adult. I used to hide my back and body under baggy clothes and avoid any activities where my back would be on show.

If you have scoliosis, please never feel ashamed. Your back and body is amazing. Being different isn’t always a bad thing. Now I am proud of my back, my scar and the strength it represents.

Not talking to others

This is partly linked to the first point but when I was first diagnosed, I kept it to myself. I didn’t even tell my boyfriend at the time, or close friends. I know that my friends knew something was wrong, but I just couldn’t bring myself to tell them. I don’t even know why. Perhaps saying the words would mean that it was more scary and real.

If you have scoliosis, the most important thing you can do is TALK to others. Scoliosis is fairly common and there are so many others in the same situation. There are many scoliosis forums and Facebook groups out there. Join them and connect with others in the same boat. Believe me it helps so much. I almost cried with relief the first time I saw another girl’s back online that looked just like mine. It was the first time that I didn’t feel alone.

There is also a fabulous scoliosis community on Instagram and Tik Tok – just search for scoliosis related hashtags to find people. I really wish social media was a thing when I was diagnosed (showing my age now!) but it wasn’t. It was harder for me to connect with others and, as I didn’t know anyone else with scoliosis at the time, I felt so alone and hopeless.

Underestimating the impact on my mental health

Scoliosis has had a massive impact on my mental health over the years, and it still effects me to this day. The effect of scoliosis on mental health should not be overlooked. When I was diagnosed, there wasn’t as much awareness around mental health as there is now. So I didn’t really realise how much I suffered at the time. It’s only more recently that I’m realising and starting to deal with the devastating effects this condition has had on me mentally.

It’s so important that you treat your mental health as well as your physical health. My experiences of dealing with Drs and surgeons over the years in relation to my scoliosis have been very cold, matter-of-fact and clinical. Once the surgery was done I was sent on my way and considered fixed. No counselling or therapy was offered to help fix my mind, anxiety and self esteem. My view is that it should be part of the treatment for scoliosis, whether surgery is necessary or not.

If you have recently been diagnosed with scoliosis, do not be afraid to seek help from a counsellor / mental health professional if you feel it would help. If you are a parent to a child with scoliosis, please bear this in mind and talk with them about how they feel. When I was a teenager, I was often dismissed as my parents didn’t want to talk about it. This had such a negative effect on me mentally and I kept how I was feeling very much to myself.

A scoliosis diagnosis and the treatment is a lot to go through – physically and mentally, especially for children and teenagers.

Pretending it wasn’t happening

For a long time after I was diagnosed, I buried my head in the sand and pretended it wasn’t happening / my scoliosis wasn’t as severe as it was. This was a coping mechanism at the time but looking back it wasn’t healthy. As a result, it impacted my mental health massively. It’s only when I finally accepted my scoliosis for what it was and began to deal with it, that I started to feel better, physically and emotionally.

Believing it could be cured

In the years following my diagnosis, I was desperate to avoid scoliosis surgery. I researched many conservative methods and fully believed at one stage that my scoliosis could be cured without surgery. I was willing to believe anything. I was very upset when a surgeon told me this was not possible. My scoliosis was very severe when diagnosed. Far past the point of bracing or any other methods. Surgery was the only option for me, and even this was not a cure.

Avoiding Exercise

I thought exercise would make my back worse, give me more pain and problems. After being diagnosed, through fear, I avoided most exercise for quite some time.

This put my health and fitness at risk and I ended up with more back pain over time from being inactive. What I didn’t realise at the time, is that exercise is crucial for those of us with scoliosis.

It’s so important to keep the back and core muscles strong. In the years leading up to and following surgery, I made an effort to get myself stronger. I now train several times a week. I run, cycle, do pilates and strength and conditioning sessions with resistance bands and light weights.

Every case of scoliosis is different and there may be activities you cannot do with your condition. But avoiding exercise completely can often do more harm than good.

Can you relate to any of these points? Let me know in the comments below.

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Lots of Love, 

Louise xXx

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