This is not a whining post, just that I thought it was time I mentioned why I write this blog.
I looked on the internet for ages to find a resource that gave me good information about nonmedical approaches to managing chronic pain and other chronic disorders.
If you use a search engine to look for ‘chronic pain’ or ‘back pain’ you’ll find endless listings for organisations (I used Google just now and found 8,320,000 in 0.34 seconds!) and many of them are designed for patients, but not a lot for the nonmedical treatment providers who work with them! And we need to remember that the majority of health care providers working with people with chronic pain are nonmedical. We don’t prescribe!
You’ll see I also wrote ‘good information’. The problem isn’t so much the amount of information available, as the quality of it. When I searched using Google, the advertisements on the right hand column of the search field included: ACC’s page, Ehlers-Danlos, Quantum Touch, biomag, natural health, craniosacral therapy, herniated disc relief, electrotherapy… a bit of a mix.
I also found the same lack of good quality information for nonmedical health providers when I searched using Yahoo.
I enjoy working in the field of pain management, but I’m worried that with so many nonmedical health providers and so little nonmedical health information that is based on science (and what is there is relatively inaccessible) that the field is wide open for well-meaning but misguided people to tout treatments that simply don’t work. OK I’m being charitable, the field is wide open for quacks, ‘alternative’ therapists, and lazy health providers who don’t have time or skills to delve into the scientific literature.
In my own field of occupational therapy (all right, I’m heavily warped by psychology), I find therapists gladly prescribing adaptive equipment including vehicle modifications and ‘ergonomic solutions’ for office settings for people with chronic pain with not a scrap of evidence that this is effective in the long term. Therapists suggesting ‘pacing’ is all about working within your pain limits (therefore progressively reducing activity tolerance). Therapists being unwilling or afraid to ask people with pain to develop skills to tolerate pain while they carry out activity, and as a result unwittingly supporting pain-related anxiety and avoidance. Teaching people that there is one ‘correct’ way to lift items or they may risk ‘injury’.
I also find that many therapists are completely oblivious to the fact that they are influencing thoughts and beliefs and behaviours in patients – but either don’t want to, or are unaware of, their need to develop effective cognitive behavioural therapeutic skills. And in doing this, inadvertently reinforce unhelpful beliefs and behaviours in the people they really want to help.
So, in part because I am an information junkie, and because I am passionate about effective pain management, I write this blog. I scavenge the scientific literature and then try to translate this into what it means for daily practice. I try to provide examples and illustrations to stimulate thinking. I hope I inspire and enthuse.
I started to write because of my postconcussion syndrome in which for a year I had incredible trouble with attention management. I couldn’t summarise or paraphrase easily and I couldn’t sustain my concentration to carry on with my PhD. To help, I started to summarise articles, and my own knowledge-based. And guess what? It helped! I’m not yet back at the PhD, but I’ve pretty much recovered from the PCS. Still get fatigued and headachey, and need regular breaks (days even) away from work. And I’m a girl who goes to bed early now.
It’s really important to me that the people we work with who have the life-changing experience of living with chronic pain (or any kind of chronic health problem) have excellent help.
There are too many people wanting to make a buck out of the suffering of people who don’t have the skills to distinguish between ineffective and effective treatment. And even amongst my colleagues, there are people who don’t know when to say ‘stop’ with an ineffective treatment, failing to recognise when it’s time for another approach, perhaps even to help people to learn to live with their pain rather than fight against it.
You know, it’s possible for people with chronic pain to live fully and expansively even with pain in their lives? And not just pain, but depression, anxiety, diabetes and any other chronic health problem. Getting rid of it doesn’t need to be the focus, living life is much more fun!
And if I can help, in a tiny way, by adding something positive to the internet mass of information, then I’m happy.
I’m on leave for a week, so this space will be temporarily vacant – don’t panic, before the end of today I’ll be posting my usual Frivolous Friday Funnies – but then it will be all silent. Click on some of the links to the right of this post for some other great places to visit, and as Arnie says ‘I’ll be back’!