Pain – The Patient Voice
There is so much to share about pain that I couldn’t fit it into a single post (click here for my post on Pain Science). In particular, there are so many great resources on persistent pain, I have found it virtually impossible to whittle them down.
In this blog I have chosen to focus on the patient voice/lived experience as I think both practitioners and those living with pain can learn so much from the patient advocates who generously share their experiences.
Many of these patient advocates have provided excellent resources to help bridge the gap between patient and practitioner, helping each to learn from the other. Increasingly, the patient voice is being included in research about pain which is a big step in the right direction.
Whilst everyone’s story is different, I have definitely noticed some common themes in the blogs and resources created by people living with persistent pain:
- pain is real
- it really helps to understand about pain and to learn that it is a complex and sensitive system which is trying to keep you safe
- everything matters when it comes to pain; it is influenced by everything else happening in your life such as sleep, stress, relationships etc
- there is hope, things can change
- you need to work in partnership with your healthcare providers
- in order to get better, you need to be an active participant in your recovery – but with support and guidance from your family, friends and healthcare team
- you need to feel that you are in control of your recovery and your life, rather than your pain calling the shots
- everyone’s experience is different – what does recovery mean for you?
A persistent pain problem can be difficult to understand and manage on a daily basis. As far as I can gather, everyone seems to be drawing the same conclusion, namely, that the way to make meaningful change is through supported self-management. By supported self-management, I mean that your practitioners are there to encourage and help you, not that you are left to go it alone.
Pretty much everyone also agrees that movement is helpful but, for many people, even the thought of it can be frightening. If you want to start in a slightly different way, Betsan Corkhill has done some amazing work on the therapeutic benefits of knitting (confirming all my biases!).
I am sharing some of my favourite patient voice resources below, if you would like to delve deeper.
In this Flippin’ Pain webinar people living with persistent pain share some the important things they have learned along the way that they wish they had known sooner.
Read how Tina has made sense of her pain by working in partnership with her physiotherapist so that she can continue to “work and live well”.
Empowered Beyond Pain is a fantastic series of podcasts. Each episode is full of practical tips and insights to help increase your understanding and shift your behaviours.
Pete Moore’s Pain Toolkit™ contains techniques to help you learn new, or use old, skills to help you manage pain in ways that work for you.
Joletta Belton is a patient advocate who is passionate about sharing her experience to help others and writes regular informative blogs. She used to be very active on social media but it looks like she might be taking a break currently.
If you would like any further information or resources, or have any suggestions on how I could improve this blog, please let me know.
If you think someone you know would benefit from this blog, you can forward it here.