In this post I wanted to talk about my experiences of scoliosis and anxiety.
If you have scoliosis and can relate please let me know in the comments, you’re not alone.
Having a long term chronic condition like scoliosis can have a huge impact on mental health, and I actually have a whole separate post and video on how scoliosis has affected my mental health.
But I wanted to talk about scoliosis and anxiety specifically, as it’s something I struggle with on a daily basis, and I actually have been diagnosed with health anxiety, which I think has been triggered by having scoliosis.
I think the anxiety around my scoliosis has changed over the years, but it’s always been there. I feel like there are different types of scoliosis anxiety for me and I’ll run through these now.
DISCLAIMER: As always these points are based on my own experiences and may differ from your experiences. Always speak to a healthcare professional if you are struggling with anxiety or your mental health. I am not a medical professional.
Fear of the unknown
When I was first diagnosed, I had never heard of scoliosis so a lot of my anxiety came from the fear of the unknown, I didn’t know what my future would look like, and it was terrifying. Nowadays, it’s much better and with social media and the Internet being more accessible, it’s easy to see that many people live full lives with scoliosis.
When I was diagnosed at 14 however, social media didn’t exist – I felt very isolated and alone and I didn’t know back then what my future held.
I still have a fear of the unknown to some extent, I dont know if I will need further surgery or how my pain will be in the future, so I try my best to do everything i want to do now, while I can.
Anxiety around curve progression
I was diagnosed at 14 and I had my surgery at 24. In those 10 years, I struggled a lot with the anxiety that my scoliosis was progressing, or would progress in the future. In my early 20s, the anxiety got so bad, that it consumed me. Scoliosis and progression was all I thought about. My curve was pretty severe (over 70 degrees) and I read somewhere that scoliosis that is severe can progress over time. I got myself in a real state many times over this, worrying that my lungs would be crushed and I’d be on oxygen in the future. Basically catastrophizing and thinking the worst.
I would take pictures of my back from different angles and obsess over them and spend entire evenings and weekends researching and on scoliosis forums. It took over my life at the point, and I probably needed help, but I didn’t realise anxiety was even a thing back then. I didn’t have a life outside of my scoliosis. I would lock myself away in my room, I didn’t want to do anything and felt hopeless. I think the anxiety actually led to depression during this time. Now I’ve had surgery, the anxiety around scoliosis progression has gone away but it has been replaced by new anxieties, more on those later!
Anxiety around other people
When I was a teenager and my early 20s, I had huge anxiety around other people as I was paranoid that someone would notice my back or say something about it, so I tried my best to cover myself up. I still feel self conscious to this day, although I’m better than I was back then. I still sometimes find it hard to make eye contact with people, and I get paranoid that people are looking at me when I’m out and about. Scoliosis has had a huge impact on my self worth and self esteem, which is something I’m still trying to work on.
Obviously the surgery for scoliosis is a massive thing and I had major anxiety leading up to it.
It didn’t help that it was moved several times as well and the waiting period was long.
I don’t know how I got through this period but I felt like I wasn’t in my own body, like it wasn’t happening to me. The only way I coped was to read other people’s success stories and convince myself I would be ok. But during this time I felt like my life was on hold, I felt like I couldn’t make plans for the future and I could hardly concentrate on anything.
Yes this is a thing apparently! I don’t think it’s talked about much but after my surgery I struggled with major anxiety for at least a year or so whilst I was recovering. Obviously, there are massive risks with surgery like scoliosis surgery as it’s such a big thing to put your body through.
My anxiety after the surgery was pretty bad for several reasons.
- I was worried about damaging my spine and that it wouldn’t fuse – I was scared to do anything.
- I took so many pictures of my back over the first 12 months comparing them, as I was so convinced that my spine had moved, I also measured my height constantly afraid I was shrinking again….
- Anxiety around other things – blood clots, infection, pain, numbness etc.
Anxiety over the future
Coming back to the present day, I still struggle with anxiety around my scoliosis.
The funny thing is, before my surgery I really thought once I had my surgery, that all my anxieties around scoliosis would disappear, but that’s really not been the case for me!
Now I worry about my back pain – will it get worse etc, and I also worry about my lower back discs and if I’ll need further surgery. I have numbness in my legs and in various parts of my body I worry about that.
I’ve convinced myself I have spinal tumours several times, even though I have had MRI scans and been told everything is normal. The anxiety never stops.
Anxiety around my scoliosis has taken over so much of my life, especially my teenage years and my 20s.
I refuse to let it take over anymore and whilst it’s still there, I am now aware of it and I’m in better control of it. I have sought CBT therapy and I also take medication to help me deal with it. I try not to let it stop me from doing things, even though I do get anxious about doing certain things/activities in case it damages my back.
I try not to let my scoliosis stop me from doing what I want/what I can, as nobody knows what the future will hold and you have to live for now. Whilst I can do things, I’m going to do them!
How do I deal with my scoliosis anxiety?
If you have scoliosis and experience anxiety then just know it’s normal and valid to feel like this. I wish someone had told me that back when I was first diagnosed.
Please don’t ignore your anxieties and let feelings build up like I did. Seek help and support, as scoliosis can have a HUGE impact on mental health and this shouldn’t be underestimated.
The way I deal with my anxiety around my scoliosis is to focus on what I CAN control and for me that is exercise, keeping fit active and strong. I can’t control my scoliosis but I can do my best to keep strong and healthy to help reduce pain.
Accepting your situation and talking with others in the same situation helps also. For years I hid my scoliosis and refused to admit I had it. This is just how I coped at the time, but I now know this isn’t healthy. As soon as you accept your scoliosis, you can make a plan to cope with it and treat it if necessary.
Supporting others with scoliosis also helps me a great deal, and this is why this blog and my YouTube channel is such a great outlet for me and is so important to me and my own mental health.
If you’ve found this post helpful or you can relate please leave me a comment, I have also done a video version of this post where I go into a bit more detail, so please give it a watch!
For more help and support on this topic, check out this post from the Scoliosis Association UK on mental health and scoliosis.
I had scoliosis surgery in 2010 and blog about my experiences living with scoliosis. My aim is to raise awareness of scoliosis and help and inspire others with the condition.