I took part in the online group discussion yesterday and have been thinking about it overnight. I made a point about pain still being pain and deserving empathy and treatment even if it’s “all in your head” and I wanted to elaborate on that point a little. I think it’s really important that the Q Lab does more work around this, especially around stigma and crisis care, because my experience has been that there’s a lot of stigma around chronic pain and a real lack of empathy. I find that because there is now an accepted narrative that chronic pain may have originally had a physical cause but that has been “healed” and so its “all in your head” many health professionals tend to take the view that you are somehow responsible for this and can heal yourself. This has happened a lot to me when I’m in crisis (I have CRPS now amongst other things, colloquially known as the suicide disease because so many people with it take their own lives because of the pain) so that really isn’t a helpful approach. I’ve done a pain management programme and I understand the reasons for this approach but I really think the narrative has to change because it’s misunderstood by health professionals and people who don’t have chronic pain. It puts the “blame” on the patient – in the same ways as resilience language is now being used to make people with mental health problems almost entirely responsible for their mental health. Of course we can take some responsibility for managing our pain , but it feels to me like the balance has tipped and the language is often being used to say that services have to take no responsibility for patients in agonising being pain. I’ve lost count of the time services have said to me “we can’t do anything for you” and passed me on to the next service, who say the same thing – or discharge me completely. And I’m left with huge pain levels, feeling suicidal, with nowhere to go except my GP, who refers me back and I sit again on waiting lists trying to hold it all together for another 28 weeks, until I’m back in the same cycle. The system needs to be joined up and someone needs to take responsibility for my care, because right now nobody (pain clinics, mental health services, physiotherapy, GP, MSK, neurology) does.