This week saw my first appointment and experience of the pain management psychology service with my initial assessment. I wasn’t sure what to expect given my first appointment with the pain management clinic didn’t really amount to much. It turned out to be a pleasant surprise…
You can read about it and the reasons why here:
To my understanding, the psychology arm of the pain management service focuses on the less traditional, alternative side of the chronic pain problem. Rather than put all of your efforts into drugs; painkillers, sedatives, antidepressants; the psychology side tries to equip you better to deal with the long term prospect and effects of being in constant pain. This extends to occupational therapy (OT) and physiotherapy as well as talking therapies, such as CBT (Cognitive Behavioural Therapy).
This particularly appealed to me as there is a balance to be had with pain relief between comfort and function. The painkillers I have been on for years give me the right balance between numbness whilst still being lucid enough to hold down a job, make decisions, be a dad. However, it’s not ideal. I still struggle with the pain but this is the most relief I can get away with without jeopardising my other responsibilities. For me, those responsibilities are far greater than me being in pain, no matter how bad it gets.
So when I was told about this option, I jumped at the opportunity. My pain isn’t going away any time soon. Perhaps never. So anything that gives me the tools to help me cope with it better, I’m all in.
This might just be my personal experience but pain management clinics can be daunting. Whenever I’ve been there as a younger person (ok, not so young now!) it can be intimidating. You don’t necessarily want to see what ‘end game’ looks like. People much much older than you with all sorts of ailments. It was for this reason that I opted out of arthritis support group offerings when I was a teenager. I’m on my own path – I don’t need to see potential outcomes, if that makes sense?
The other issue I find with pain management clinics is that there will always be those who wear it like a badge of honour. Those that want to ensure everybody in the room knows they are (in their view) suffering the most. Whether that’s a lot of vocalised moans or sharp intakes of breath through their teeth. I appreciate pain sucks but my experience of months spent on hospital wards throughout my life is that it’s the quiet ones that are suffering the most. The ‘silent shufflers’ I used to refer to them as. They don’t want to draw attention but you can see in their eyes just how uncomfortable they are.
Perhaps I’m just a cold person but my view is everyone under that service is suffering. It doesn’t need to be a competition. You don’t need to impress or convince somebody else who’s also in pain. I also appreciate we all deal with it in our own ways, however.
I had a lovely clinician assigned to me who put me at ease early on. Traditionally, I am not very good at talking about how I’m feeling etc. We reviewed my recent history, what caused the flare, the type of pain I’m in daily and what the outlook was.
As I spoke, I realised how we are now at a point with my health currently where I need to stop fighting the situation and start accepting it. I need to start dealing with it and adapt. For the sake of my own mental health.
We talked about the mental health impact. Lack of sleep, low mood, nightmares and my fears for the future. She reassured me by agreeing that this was all a result of the pain and physical health issues. Take those away and I wouldn’t be depressed, in her opinion.
I was also asked the usual questions about whether the pain had lead me to abuse anything. Alcohol or illegal drugs etc. I answered honestly. ‘No, but I would be lying if I said I have never used whisky to help me sleep when at the end of my rope at 3am.’. I also appreciate now more than ever how people can be pushed to illegal substances. I have never taken drugs in my life, with the exception of trying a bit of weed at university. But when you are in this much pain, constantly, I can fully understand why it enters people’s minds.
The scary thing about the discussion; that I should point out went on for over an hour and half, is that she ‘got’ me straight away. Within 20 minutes I got the impression that she had already sussed out the type of person I am. It was also a little bit unnerving.
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Reflecting on my behaviour
She talked about me setting a high bar for myself. How I go above and beyond when I am in work or able to do things which then leads to me burning out quicker. Or my attitude towards not taking painkillers until I’m desperate rather than making myself comfortable etc.
She drew a graph, like a wave, showing my peaks and troughs. For example, at work doing extra hours, followed by stuck in bed a few days later and explained how through awareness and recognition that could be managed much better. How we should be aiming for less deviation by removing the extremes. Knowing when to rest or building up slowly when able to do things etc.
This observation and chart was the real lightbulb moment in the appointment for me. It was completely true. I knew what I was doing was wrong but I couldn’t stop it. I’ve always felt like I have something to prove or have to work harder than everybody else when I am well as there will be times when I’m unable. She talked about ‘my need to contribute’ and how it’s a positive mechanism I’ve developed out of my challenges but it can also be to my detriment. My sporting achievements demonstrate this.
After my last flare in my twenties, I took up rugby for the first time since I was at school. I went from having limited movement to walking out into a competitive game of rugby at 32 within six months. Looking back, it was crazy but I’ve always made the most of my opportunities when I can.
However, by taking this approach, I crash and burn. I work too hard, push too hard, try to prove people wrong (who knows who they are!?) and then I end up breaking. The Dr was right when she said we have to level those extremes out, even though I know that isn’t going to come naturally to me. Toning things down, to say 80%, is certainly not a prospect I am looking forward to.
At last, a joined up approach
For me, the most impressive thing about the pain management psychology assessment was the joined up approach. I have been going round the houses for a year now, trying to access occupational therapy/health, physio, podiatry, orthopedics etc. So to come away from that appointment with the clinician talking about getting an OT specialist to visit my home environment, speaking to Physio to see if they can contribute anything, writing a letter to my doctors recommending new pain relief options; was a breath of fresh air. This is not to mention next steps with regards to psychological therapies (wellbeing services, group sessions and 1-1 CBT) to help me cope with life in constant pain.
With all of the awfully disappointing medical appointments I have sat through over the last twelve months, where there has either been a lack of urgency or action, this was an absolute pleasure. From the knowledge, approach and sheer compassion of the clinician, the follow-up actions and linking up with secondary services, to the steps forward in making me more self-aware of my behaviour. It was great.
You can blame lack of resources and waiting lists all you like (and yes, there are big challenges around this; I work in the NHS myself) but this appointment showed how one person with the right attitude and compassion can make a huge difference to somebody. I came away from that appointment in a clearer mindset, with less feeling of despair and you could go as far as saying with a tiny bit of hope.
One final takeaway for me from that appointment which I thought I’d end on.
I need to give myself more credit as to how well I know my condition and myself. Talking for that hour and a half, I realised how over the years I’ve become a bit of an expert on myself. Now I know that sounds obvious but let me explain. I can talk in such detail about how I tick, what my triggers are, where things are likely to go etc. both physically and mentally. This makes for such a healthier and productive dynamic and conversation between clinician and patient.
If there’s one thing this last year has taught me, it’s to have the confidence to be my own advocate. Anyone out there in the same position as me; I would encourage you to do the same. Afterall, nobody spends as much time with you as you but you have to be self-aware to learn your body’s own cues. If you can be the authority on your own health and communicate it well, the doctors have no choice but to listen to you.
To learn more about pain management services offered by the NHS, including pain management psychology, visit here: https://www.nhs.uk/live-well/healthy-body/how-to-get-nhs-help-for-your-pain/