June is Scoliosis Awareness Month!!! It’s a time when those of us with curved spines can dedicate our month to raising awareness. Scoliosis has no known cause, and no cure. Which is quite difficult to deal with, especially if you’re hearing for the first time that you have Scoliosis.
When I was 13 we went to the doctors because we realised my spine had a slight curve in it. They sent me for some X-rays and we got the results. Saying it was a slight curvature of the spine and that I have a condition known as Scoliosis. We talked through what that means and how it could affect me. We spoke about how I could prevent the curve getting worse by wearing a brace, but the doctors didn’t think it was required at the time. So we carried on. A few years later when I was 15 a family member noticed the curve in my back when we were on holiday. We went to the doctors again and we were told, yes you have Scoliosis and they think that because I would stop growing soon there would be no need to wear a brace or have surgery.
This is a good thing as I was born with a heart condition and any form of surgery, especially on your spine is risky, but because of my heart condition it makes it much more risky.
Again we carried on, but this time we went for some physio as I needed to work on my posture. I finished Sixth Form and went off to University. Once I graduated I went off and found a job.
My job involves me being on my feet most of the day. You’re probably thinking ‘why are you doing this if you’ve have a curved spine?’ After university I applied for hundreds of jobs, and was told ‘no’ by all of them. When you apply and get rejected, even when you haven’t disclosed your disability it gets a little disheartening. When I applied for the job I currently have I didn’t expect to get it. I mentioned in the interview that I was visually impaired and had learning difficulties, I thought ‘what do I have to lose?’ I had been out of uni for six months and been doing volunteering and things to try get experience. But no luck. Finally I got the call offering me the job.
I was so happy it was wonderful. But then I felt worried and anxious I wouldn’t be able to do it and I’d be back at the job centre again applying for more jobs. But six and a half years later I am enjoying my job and the support that comes with it. Yey me!
Back to my Scoliosis- see what I did there…anyway. Last year before Christmas I went to the doctors with back pain. The doctor took a look at my back and said he could see the scoliosis through my t-shirt and that he was surprised I had been left with no follow up appointments. He said it was no longer mild and that it was severe. But having surgery would be the last resort in his opinion given my medical history.
While I am angry that my back pain was left unchecked with no follow up appointments by the NHS, there is nothing I can do about it. I have so many health problems it is hard to keep track of them all. All my other problems have follow up appointments. I don’t understand why the hospital left us to it. Yes your health is your responsibility, but when you have so many other health problems and you’re going through so many life changes within school, it is not OK. However I cannot just sit and be angry about it because that will not help.
I had three weeks off at the beginning of the following year, because of the cold weather affecting my back so much. I went to the doctors again and was still waiting on phsysio I had requested a few months earlier. I got my sick note and kept sending it to work. Feeling guilty for taking so much time off. However my work is wonderful, they just kept telling me to check in and let them know what was happening and to get rested. I managed to get some physio by going private. I had some sport massages and we went over some more exercises. The person we saw was great, she understood the pain I was in and we talked about how physio and sport massages would be a great way to address the pain I was in. After a few weeks I was a lot better and I kept going back for physio after I returned to work. By this point my physio with the NHS was also available. The person we saw was lovely, she agreed that physio and sport massages would be a great way to deal with my back pain and we also discussed hydrotherapy. Again the person we saw agreed surgery should be the last resort and this helps because it reassures me that I can manage my pain through exercise, physio and pain killers. As well as staying warm by wearing layers and using hot water-bottles.
My friend mentioned she knew someone who had Scoliosis and who had the surgery done and would I like to meet her. I said I would and a few weeks later we met up for a coffee and we had a chat about the surgery and our different paths to diagnosis. She was lovely and put my mind at ease. I have decided surgery is not for me, although I am in a lot of pain. I know that it is not the right option at this time. Had I have known it would get worse as I got older, I am now 27, I might have had the surgery before or after going to university.
Surgery is not for everyone and the NHS recognises this. They understand the complexity of the surgery and ensure you know what the journey will look like should you have it done.
I was advised against it, but they talked me though what would happen anyway. This was helpful as it made me understand how difficult it would be. The surgery involves having a metal rod inserted into the part of your back which has the most severe curve. For me this is the top. Once you have had the surgery they get you up and about the next day. The reason for this is you need to keep moving so you don’t stiffen up. The physios and other members of staff who help you understand the amount of pain you’re in and encourage you to keep going. You’re given pain killers to help ease the pain and to enable you to keep doing the physio. They get you and your family ready for when you go home and help them to understand how best to support you.
If you’re suffering with Scoliosis don’t be afraid to reach out to SAUK. Also use Twitter to find support. If you have questions then don’t be afraid to ask.
Living with a curved spine is hard, I’m in pain right now. My whole right side is aching. You should know that there is support out there. My diagnosis came at a difficult time, SATS year and then GCSE, followed by uni. If you’re a parent please check your child’s posture regularly and if you noticed their spine is not straight, go to the doctors and have it followed up on. You can prevent it getting worse. You can manage Scoliosis.
More blog posts are on my home page