As a chronic pain patient, I spend my days willing the pain to feck off and find a new hobby. I’ve got discs bulging in my neck, lower back joints that decide when they want to play ball and unexplained pain in various other places. I’ve tried tonnes of therapies, medications, procedures and am still here, battling away and waiting for a day where I’ll wake up and magically be pain-free. I’ve realized that is unlikely to happen. When I said that to a doctor a year ago, when I was discussing my plans for returning to work, I was told it was an awfully negative outlook to have “for someone so young”. They saw my realism as a thing to count as a negative attitude instead of just deciding that it’s something I’ll have to figure out how to live with instead of in spite of. In contrast to that, it seems that the new wave of thought for pain management doctors is “pain acceptance”, where the patient is being told that instead of pursuing medical cures to their pain, that accepting it and finding holistic methods to deal with it and live with it are better options. This is being met with some opposition, in particular in the USA, where there is lots of talk about the growing opioid issue at the moment.
The definition of pain acceptance is given as “a willingness to experience continuing pain without needing to reduce, avoid, or otherwise change it”. In 2015, Dr Jane Ballantyne wrote in her paper in the New England Journal of Medicine that it should be the standard of care for chronic pain patients, taking pain medications out of the equation altogether. On the outside, it sounds like a pile of shite, if I’m honest. Who would want to live like that? Chronic pain is a reality in my life and I’ll be damned if I’ll just lie down and take that without a battle. I’ve spent the last four years trying various approaches to get it to go away. It’s made me miserable and shaped the way that I parent, the way I interact with friends and family, the way my relationship with my partner works. It has impacted my career and areas I want to work in more than I could ever have imagined. So, the thought of it just being something I’d be happy to accept without trying to change it is laughable to me. But this is the prescription being given by doctors to so many people, and that in itself is a tough pill to swallow.
This is not me trying to advocate for a big-pharma response to chronic pain by any means. While I’ve tried all the medications out there, alongside the various therapies, I’ve also been working my way through getting off them and trying to live without them. The side effects have at times been far worse than the good they were doing. Being on them has affected the way I live my life. I’ve been told that I should not have another child while on these medications as they are not medications that can be taken during pregnancy. Various painkillers contain depressants, which have not helped with my mindset in all of this going on. But that is not to take away from the things I have been able to do as a result of taking these medications, and the good impacts that they have had at various stages of my life.
I understand that the opioid crisis is something that is hugely impactful in American society, and even here in Ireland, we see a huge issue with dependency on medications as a result of prescription medication being used after injury. However, there is a difference between those who abuse prescription medication long after it is needed and those who need it long term. To throw those two into the same boat and be told that it is better to try a non-medical route entirely, to put up with the pain and get on with it, is not the best approach. Imagine, if you will, a diabetes patient being told that their blood sugar issues are something that is just part of their life and that insulin regulating medications should be taken away. There would be an uproar because it’s something considered a REAL medical illness. With invisible illnesses, the symptoms are just as real but the cause may not be as apparent, and it seems that that is where the line is drawn with many in the medical profession. As scientists, they are taught that unless something is visible on tests and provable, it doesn’t exist. Chronic pain in many cases isn’t a nice fit into a measurable box.
The studies are saying that pain acceptance helps with reduction of pain levels because it reduces the stress levels of the patient who would otherwise be trying to find a cure and endlessly stressing about it. This I agree with. An acceptance of where you are in life does reduce the stress in trying to endlessly find a fix. Reduction of stress will reduce tension and inflammation and therefore have a positive effect on pain levels in a patient. BUT. There is a caveat. Pain acceptance from the patient is one thing, doctors writing it off as the only possible solution is quite another. It is too easy to say “Oh we don’t know, here, learn to live with it”. I accept that in certain circumstances this may be an option they wish to opt for. But as patients, we don’t want the easy option. We want the option with the best outcomes. We want doctors like House MD, Derek Shepherd, doctors who have a mystery illness and throw tests and study at it until they figure out the problem. We’re not looking for you to fix us. We’re looking to find the reason, and if that reason can be fixed, THEN we want the fix. Instead, we have a healthcare system which tells us that we’re in it for the pain meds, that we need to learn to get over it, or as one doctor told me, that we’re making it up for attention. Much as Dr. Brown Bear has supposedly wrecked the impression that young children have of the NHS, these television shows create a huge gap between the reality and the dream of doctors looking for diagnoses for their patients.
I’m one of the lucky ones. I’ve had the tests. I’ve got a GP who is trying everything, referring me everywhere. I’ve not been told to live with it, but I have received the straight talk that this is something I am going to have for the rest of my life. I have made my peace with that. (For the most part, I’m not filled with Dalai Lama levels of zen about it). Pain acceptance IS something I practice in my life, but it is alongside a variety of other treatments like physiotherapy, acupuncture, medication and pacing, and learning my own limits. My doctors do not practice it – they look for the cures, the reasons, and refer me for tests as needed. This is not always the case – there have been doctors who have told me it’s all in my head, doctors who refused to look further than the scans and to the whole patient. Being told I had to learn to live with it, and they would not be pursuing further treatment by those doctors increased my stress levels greatly. When you’re living with something and someone tells you they don’t believe you, it’s definitely something to get stressed about. For the most part, though, I am luckier than quite a lot of pain patients who are being told that this is their lot in life.
I’m 26 years old and I have made my peace with the fact that for the rest of my life, chronic pain is likely to be a feature. The findings of the doctors I deal with have shown things that are degenerative over time, so it’s not likely to get better and in fact is likely to get worse as I age. It doesn’t stop me living my life now, but it does change the way I have to live it. This is what I have made my peace with. But I don’t believe that pain acceptance as a sole treatment method should be pursued by any medical professional. That is not their choice to make. There are many other choices, like finding a diagnosis, pursuing the best outcome for their patient, and in many cases, long-term pain medication is part of that outcome. That is why we, the patient, go to you, the professional – we can practice acceptance on our own time.
BadMammy is on Facebook, ranting about toddlers, chronic pain acceptance and everything in between. Come say hi!