I’ve recently written a blog called ‘A patient’s understanding of pain’, which explains some of the difficulties I have found fitting my experience of persistent pain into some of the published models of pain. Armed with my new understanding of MY pain I decided to think through what else I could do to further improve my pain situation. An area I felt worth exploring was my ‘acceptance’ of my persistent pain.
I don’t seek to repeat all the contents of my previous blog here, but to understand this current blog fully I suggest you read my ‘A patient’s understanding of pain’ blog first. It can be accessed by clicking HERE.
My persistent pain condition arises from a manual handling accident which took place around 10 years ago. I experienced a herniated disc which compressed my sciatic nerve. Around 18 months after the accident I underwent back surgery, but unfortunately my sciatic nerve was by then permanently damaged.
My sciatic nerve is sensitive and easily irritated. At the beginning of my pain journey I suffered severe back and severe neuropathic pain. I currently suffer with mainly neuropathic pain (at times severe) and some back pain.
The question of whether I have ‘acceptance’ of my persistent pain condition is a difficult one for me. Looking back to at least the first couple of years following my accident, I am sure that I didn’t have ‘acceptance’. I am convinced this was partly due to not being told by the many clinicians I saw that my condition was likely long term, if not permanent, or if they did say this not being told clearly enough or maybe sensitively enough in a way that I could take this message on board in the difficult situation I was in.
I completely understand that following my accident statistics would suggest there was a reasonable chance that my condition would resolve and so I understand why, for say the first 6 weeks, I wasn’t being told that my condition might well persist long term. However, there must have come a time reasonably early on when the clinicians realised there was a good chance my condition would persist for at least the long term, if not for life.
I don’t remember the possibility that my condition could be life long being communicated to me, and if it was then it wasn’t communicated clearly enough, or in a way that at the time I could ‘hear’. I think my ‘acceptance’ of my situation, and my ability to move forward with it, would have happened quicker if clinicians had been more open and honest with me from the beginning.
I seem to remember that after my back surgery ‘failed’ my rheumatologist began to talk to me about there being little else that could be done to help me, apart from maybe having a spinal cord stimulator implanted. This was around two years after my accident, and I think this was probably the start of the process of my ‘acceptance’ of my condition. She had not been my rheumatologist for long, and was sensitive and caring in her discussions with me.
Once I started to accept my condition was likely permanent at a cognitive level, of course I found this difficult at an emotional level. Very difficult.
I can’t fully remember but I think ‘acceptance’ for me was quite a slow process. It didn’t help that I was part of a lengthy assessment process for a spinal cord stimulator. This just seemed to put my life on hold in terms of understanding what my future might look like. I think I was in the spinal cord stimulator assessment pathway for well over two years,.
I have probably had full ‘cognitive’ acceptance of my condition for several years now. Cognitively I understand, and accept, that I have a permanently damaged sciatic nerve and some difficulties with my back, and that it is likely I will experience pain on at least a long-term basis, if not lifelong. Emotionally however I am not sure if I do have full acceptance, or ever will. I question whether anyone who lives in daily pain can have full emotional acceptance every day of their lives.
One of the interesting outcomes for me of thinking through my ‘acceptance’ is that it appears to me that there is a conundrum around acceptance and the predictive processing model of pain, and other explanations of pain. From everything I have read, heard and know from my own experience, ‘accepting’ your condition is important in terms of being able to move forward with your life and being able to live life to its full. However you could argue that this ‘acceptance’ may well act as an important ‘predictive’ factor which makes future pain more likely. After all, a large part of my ‘acceptance’ has necessarily involved a prediction of future pain!
An interesting conundrum!