"How the Pain Clinic saved my life."

I have lived with persistent, chronic pain for more than 25 years. I’d learned to live with this part of me, the pain: this controlling, coercive, abusive thing that I have spent my life tiptoeing around for fear of setting it off and having to suffer its debilitating punishment.

My life was physically restricted, I had to manage what activities I was able to do, I was highly restricted in terms of diet, even the caffeine in a cup of would set it off and I’d be off work, again… fearing HR raining down on me for inefficiency. My ability to complete my work was also affected. My enjoyment of life faded. In 2022 my condition then deteriorated considerably: my pain became more severe and completely unpredictable. I couldn't take it. I made serious plans to end my life. I was at the point of moving my savings to shared accounts for my wife's ease once it was done.

Then I received an appointment to join an online session with the pain clinic, and a questionnaire to assess my baseline mood, pain and how these were affecting my life. Happily I now find it difficult to relate to how I felt at that time, thinking about the responses I gave, and my state of mind feels like a bad dream lingering after just waking up.

I remember several feelings from this point: Relief – after being referred by my consultant and sitting patiently on a waiting list, a rescue ship was finally on the horizon. Was this potential relief giving me something to finally look forward to? I’m also a ‘fixer’, if there’s an opportunity to fix something I latch on to it and maybe this was a chance to ‘fix me’. This gave me the energy to give it my all.

It took time for me to build a sense of ‘I can do this’ to a point that I was able to work with the team and start to achieve periods of reduced pain. I won’t lie, at times I’ve wished with every part of me that they could just ‘fix’ me and rescue me from this pain, but as the program has progressed, I have felt more and more able to make it work. I am now at a hugely significant point in my life now where:

- I no longer feel like pain is my body’s way of punishing me.

- I feel a lot less anxiety, no longer living in fear in the shadow of this ‘beast’.

- I am much less fearful of pain, it doesn’t consume me like it used to, and it doesn’t escalate as it did before: like a snowball rolling down a hill building to an unmanageable size.

- I get fewer flare ups and take less pain medication.

- I can drink tea, and even coffee.

- I no longer consider suicide an acceptable escape.

Without this program I know, without a doubt, that I would not be alive right now. It hasn’t been easy, I’ve struggled with self-efficacy, self-doubt, fear, panic. I’ve inwardly challenged and argued stubbornly against the ‘tools’ the team promote wanting nothing more than a pill to make the pain go away, but I have come to a place in my own pain journey that is manageable, and life is becoming enjoyable again.

I am not ‘fixed’. I still feel broken. I still fall into times where I feel metaphorically stuck in pit with my pain glowering down at me telling me I’m worthless and could never hope to live a life that’s in any way normal, but I am more able to climb out of that pit and diminish that beast into something that actually needs my sympathy and care. I feel like I’m winning.

I want to say how grateful I am to the team for their guidance, from group-level video calls which educate and ‘set the scene’, to one-on-one patient care responding to individual successes and failures. Had it not been for this flexibility in approach I believe I would have found this a ‘one size fits none’ programme and imagine I would have abandoned the process.

I’m also grateful for the initial referral to the pain clinic. It was, at the time, more a response to my begging for help with my pain, so I wish it was more accessible, or that nurses, doctors, consultants could feel more confident that there is capacity to refer patients.

I wish there had been a way to have the pain clinic visit me as an in patient when my pain was so consuming and so unbearable. Whilst in a frankly desperate place, I think I would have gotten comfort from some of the pain retraining techniques.

All in all, thank you to the pain clinic. You have not only saved my life, you have given back to me enjoyment and fulfilment despite my pain. I hope the team continues to be supported in helping others to achieve the same.

Thank you from the bottom of my heart.