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Life & Wellbeing

Life With An Invisible Condition


Back in 2009 I started a new job and within months of starting that job I started suffering from persistent back pain. I'd never experienced back pain before and I was sure that with some pain relief tablets from the doctor, my pain would just disappear. And then when it didn't, I thought a course of physiotherapy would be sure to sort it out, but when that didn't work I started to realise that perhaps it wasn't going to be as easy to 'fix' as I first thought.

The physiotherapist told me that I had scoliosis. I had two curves in my spine - one at the bottom and one at the top and it was this that was being pinpointed as the cause of my pain. I learnt that scoliosis was often picked up in childhood or in the teenage years and if the curvature was large enough (mine wasn't) then it was operated on. My scoliosis was seen as mild in its size yet the pain it was causing was anything but.

It was clear that the change in job, which now involved a lot of sat down desk work had triggered my pain which would often leave me feeling wiped out most days, but I couldn't afford to just quit my job. So I tried it all...

From acupuncture (despite my fear of needles), to daily exercises (I spent most of my breaks at work locked away in what was used as a prayer room desperately trying to find some relief from the pain), to seeing a chiropractor on such a frequent and desperate basis that she started to not charge me for some of my sessions, to trying yoga in my front room, to paying for sessions with an osteopath, to seeing different consultants and specialists and having different scans done and following their recommendations and advice. To trying pretty much most of the different tablets that the doctors could prescribe (even an antidepressant that was supposed to help relax my muscles) to buying ALL of the creams and rubs to help with pain and even trying out a tens machine and many different tools I'd bought online designed to offer some sort of relief.

But the pain rarely eased up and I eventually requested redeployment at work and was transferred to a department where I no longer had to sit as much anymore. The organisation I was working for also paid to have a chair specifically built for me and paid for other tools and such to help me get through the days with as minimum amount of pain as possible. At the time I remember that I felt incredibly fortunate to have had those things done for me, but in a way I also felt quite embarrassed and a bit guilty.

And of course, the pain I was experiencing wasn't just affecting my work life - I was struggling to do lots of things at home too including things for and with my children. I spent a lot of time in bed (or laying on the floor, which was probably the thing that relieved my pain the most).

My Husband was amazingly supportive and so were (most) of my colleagues at work, yet even so the guilt that I felt about it all felt crushing even though none of it was my fault.

I'd gone from being a healthy, fit young girl in my early 20's to someone suffering from chronic daily pain which affected every aspect of my life, BUT I still looked like that healthy, fit young girl in her 20's. My pain was invisible and so I felt that it could be easily overlooked by others, especially so as I had all of these tools and treatments that were supposed to be helping, yet often didn't.

I remember times when people would ask or expect me to do something that I knew would make my pain worse or that I knew I'd struggle to do and I pretty much always had a conflict appear in my head. Did I tell/remind them that I would struggle to do what they were asking/expected of me? But then risk feeling like I'd let them down or put upon them? Or did I go ahead pretend I was fine, make my pain worse and potentially spend the next few days/weeks paying for it? Sometimes I just couldn't handle the guilt that not doing something would bring or the fact that I might have had to try and explain a condition that I didn't fully understand myself to someone else. I also remember often feeling like I didn't want to 'complain' about my pain because I told myself that I was lucky compared to some of the far worse things that other people were going through.

It took me longer than I like to admit to realise that I was putting so much undue pressure on myself for something that wasn't my fault. And to realise that whilst our existence is a miracle, our bodies aren't perfect and that there will never be a single person that goes through life without needing help from others at some point (maybe even several points) and that I would never view that somebody who needed an extra bit of support, as 'putting upon me', so why was I treating myself as such a burden?

Once I learnt to release myself from the pressure and the guilt that I had placed upon myself, I realised that it was okay to say, "I'm struggling today" and that it was okay to ask for help and to know where my limits were on the bad days. It was good, no it was crucial, to invest in myself and my well being and that meant learning to not feeling guilty for things that were out of my control.

Looking back, those years of coming to terms with being affected by daily chronic pain were incredibly tough and I now feel proud of myself for everything that I achieved during the hardest times. My body may have been weak, but I was strong, even if I didn't know it at the time.

I am fortunate in that I have been able to adjust my life in a way that means I am now able to better control my back pain and am mostly able to live pain-free, though of course I still have my bad days and it's on those days that I remember to be extra kind to myself and know that it's okay to ask for help if I need it.

It's normal to not always understand or be able to give solid reasons for things sometimes - our bodies and our minds are complex and often the road to even coming close to finding answers when it comes to whatever it is that we are going through can be one of the longest and the slowest, and that's even IF answers can be found.

And ultimately, we do not owe anything more than we can give - we should simply do what we can do without compromising our health and/or our well being, and no matter how much that is, that is enough.

Invisible conditions will affect us all at some point and rather than allow them to make us feel isolated from others, it's important to realise that it can be beneficial to share our stories, in more ways than just for ourselves. When I finally started opening up about my struggles with chronic back pain on here, I received so many messages and emails from people thanking me for sharing my story from people going through the same sort of thing or from people who knew others that were. And the same thing happened when I opened up about my struggles with anxiety and when I shared quite a raw video where I talked about feeling isolated and sometimes lonely as a new Mum.

We don't always get to choose what we go through and we get through things because we have to, but our tough times don't define us and actually, I believe that ultimately, they serve to make us stronger.


3 comments

  1. This story resonates so much with me. My journey has been almost identical to yours. Discovered I have scoliosis in my mid-twenties and struggled to cope for such a long time. It’s definitely an isolating experience when you don’t know how to deal with the pain and no one really relates to what you’re going through. Thank you, thank you for posting this. It’s nice to know I’m not alone.

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  2. I can really relate to this post Alex - I have various invisible conditions and it can be so hard to ask people for help. I often feel like a burden, but like you said - I wouldn't think others in my situation are a burden, so I don't know why I put that on myself. I've also been struggling with back issues recently, so can understand just how draining that pain can be. I'd be really interested to hear about the things you have found most helpful with your pain - I know we're all different, but I'm willing to try anything that might help! Thank you for being so open about your physical and mental health.

    Jenny xx

    www.jaffacat.co.uk

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  3. So sorry that this caused/cases so much pain for you Alex, thanks for sharing xx

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