I have been suffering with chronic pain as part of my chronic illness for as long as I remember – I thought it was completely normal when I was ten – but more severely since I was around 15 years old, and it’s often hard for me to see past the fact that I’ve somewhat “lost my youth” to my pain. In July of last year, I spent a week in Bath on an individual pain rehabilitation programme, and then spent a further three weeks there this January on a group programme. I have learnt to protect my heart and mind with a lack of trust and a lack of hope, so I was severely cynical, but I can truly say that it changed it all. Several people have asked me about my experiences with this service, so I thought that it might be useful to write about it in a bit more depth.
I was extremely lucky to be offered both of these programmes, with the first being a year ago this week. On my individual programme I did not open up as much as I could have meaning I got much more out of my three week programme, but it was an extremely important part of my journey. One of my biggest issues was how co-dependent I was with my mum, and the staff began to keep us apart and they took me out to quite a few different places throughout the week.
Some might say that this doesn’t sound like treatment for pain – and I would have argued the same at the time. But for me, my anxiety was so tied up with my pain because the pain stopped me from going out alone and would essentially immobilise me in a lot of situations.
In comparison, my group programme was more focused on the pain itself and my mindset, along with the anxiety and other emotions and issues that pain can cause. Chronic pain is so, so complex and although your mindset will not make it go away, it can change your perspective and how you then go on to deal with the world. That’s obviously an extremely basic version, but I think the point I want to make is that if you go on one of these programmes, you really have to trust the staff and try to let go of your overall cynicism. I know this is difficult because we protect ourselves so much when we are in this constant pain, but these programmes are built on trust and participation.
Living in Bath for 3 weeks, 2 of which were on my own, was so crucial to the changes I made during my programme. We had to go on food shops on our own, do our washing, support each other and generally just live independently, which isn’t something I’d ever done properly – challenges came up in both the independent living and the social aspects of the stay, but I learnt how to deal with and overcome these issues.
A lot of people are often intrigued by the programme I did in January, mostly because I came back not walking with the walking stick I had been using for a week and a half. They either think I was faking, or that I’ve been healed, but it’s neither of those… I had been gaining strength since my July programme but I was reluctant to come away from my walking aid without the support I then had from the staff.
A few people have asked for advice about going on programmes like this – and I think I would mainly say that an open mind is everything, both in terms of trust as I said but also in not expecting any certain outcomes. It’s made very explicitly clear from the beginning that these programmes do not get rid of chronic pain, they don’t even necessarily reduce it – for me, it reduced as I was less focused on it, but for some it might even rise slightly as you are challenging yourself and participating more in your life. If you put everything you have into these programmes, you will get something out of it, whether that be gaining your independence back completely or the first steps on a longer journey.
Thanks to BCPS (and the NHS, of course), I’m off to university in September, I finished my A Levels, and recently I’ve been to concerts, Pride, parties; I am doing more than I managed to do across several years of my youth. I am forever grateful for this – I realise I am extremely lucky to have been given this opportunity and I will never take it for granted.