ME and health and social care

I heard that the ME Association’s theme for ME Awareness week this year was our experiences with health and care professionals. As a qualified social worker with 10 years’ experience, and another 6 working in social care, I got to thinking about my own interactions with health professionals over the three years since I became ill with ME again, and my previous experiences as an adolescent with ME over 20 years ago. There is often seen to be a divide between health and social work professionals regarding the social and medical models of disability. A medical model looks to solve the medical problem and enable an individual to move on with their lives within a society built for able people. A social model would say that society needs to adapt to enable disabled people equal access to work, leisure and services.

The reality is however that it’s not quite so black and white. We need a strong medical approach and the social model is important but I’m inclined to think it can only go so far for those of us who rarely leave our homes (although we’ve seen inadvertent inclusivity as a result of the pandemic and an increase in internet video communication, sadly this wasn’t driven by disability inclusivity but public demand for services). My wife is a qualified district nurse. So much of her specialist community degree training emphasised the importance of community nurses working in a holistic way to see how a patient’s whole life situation may be impacting on their health. On a basic level this may mean working with a patient with breathing difficulties and helping them to rethink owning a parrot and highlighting the dust and feathers everywhere in the home while acknowledging the emotional toll that a decision to part ways with the pet would have. An insight like this may be lacking for professionals chained to their consulting rooms. Sadly, so often social work, which should be the bastian of holistic care in contrast, is so underfunded that assessments become formulaic, service-led and process driven, looking to solve a specific problem and close a case rather than having the ability to walk with individuals through their challenges on a longer-term basis. 

Over recent years a Scandinavian model for client engagement called social pedagogy has become more popular, but perhaps may never gain a foothold in the UK due to our established and risk averse systems. In fostering, social pedagogy is adopted to place experiential activity at the centre of the therapeutic relationship. It may mean sitting on a bed with a child who has had a nightmare when all the safer caring advice would look at risk of allegations in this scenario. With pedagogy, solutions come through relationship rather than process. I sometimes think that if professionals were able to spend more time with their clients we would see a much greater level of understanding, especially with regard to ME, where GPs have to make a judgement about what’s best for their patients without a lot of time to process what else might be going on for them.

Over the last few years, with regard to ME/CFS, this has meant referring to NICE guidelines on a condition which they may still have little knowledge of. If they don’t have time to see the whole person, they may not see the wider struggles that we face, and fail to see why recommended treatments are not appropriate. So it’s our job as patients to try and help develop the patient/doctor partnership and also do our best to educate our GPs – they can’t know everything about everything but it’s really about how we approach the relationship in order to enable them to ‘hear’ us. Sadly patients should not have to feel like we have to perform to ensure our GP believes or understands us. 

At present, within the contested world of ME treatment and support, or lack of it, it feels like as ME patients we’re trapped within a divided world of opinions and I experienced this to some degree through my diagnosis three years ago (2018). I initially saw one GP at our practice who was very dismissive of my concerns regarding nerve issues I was having before I became fully ill with ME a few days later. I decided that I would book an appointment with another GP when I was hit with the post viral condition which I now believe to have been a development of mild ME that I hadn’t realised I was carrying.

Finding a GP who was empathetic was a massive deal for me and it’s only years later, having had regular therapy, that I’ve been able to see how embedded a desire to be believed was for me and how I’d buried the stigma and shame of my teenage ME years (I recovered when I was 17), of not being believed by many doctors. It’s important to understand how our interactions with medical professionals can lead to a lot of trauma when we have not been believed in the past. When I was 11 or 12 years old, a child psychiatrist stated that I was a school refuser and got me lifting medicine balls as an in-patient. My own grandfather didn’t know what to make of my illness, so just stopped talking to me. These things had become so much deeper within my psyche than I first realised, so that when I came to explain to my GP why I thought I might have ME again, despite wishing I didn’t, I was acutely aware of how much this person held power over me without fully processing why. Would he issue a ‘fit note’? Would he listen and accept when I stated I did not wish to attend any sort of fatigue clinic or take part in (now discredited) graded exercise? Would he diagnose me with ME as I wished (if it was to be ME), or CFS, which I was desperate to distance myself from, because it felt like it fed into that feeling of being disbelieved.

After months of tests coming back clear, I knew we were getting closer to the point where I would need to be diagnosed with something. My GP was great, and experienced, but I could sense a tension within him, that he wasn’t fully following NICE guidance with me, and he said that as he had not had a case of ME before he needed to speak to colleagues. It’s important to remember that while we know ME is actually quite prevalent in society, there may be many experienced GPs who still have not had someone on their caseload with the condition. 

During this period of waiting for a diagnosis, I needed to update my sick note and my chosen GP wasn’t available. I had to speak to another GP to get this formality completed. I soon realised that this particular phone consultation was going to be a matter of me jumping through hoops. I was told that I needed to keep up my activity levels, that it was important to remain active. I felt my body tense as a response to decades of repressing the impact of not being believed. Being told at the age of 11 or 12 that my lived experiences were not valid, that I was somehow not in the club of ‘normal’ people and that there was something going on in my mind that I’m somehow just not mastering was devastating. For this to be inferred to me as a professional adult felt hugely patronising.

My GP did diagnose me, albeit reluctantly about six months after I initially became ill, and an MRI scan and further final blood test. He also agreed to diagnose me with ME/CFS, of which I was grateful. Within a month of my diagnosis, my wife, kids and I moved away from our city home in the Midlands to my parent’s farm where I grew up and so I never saw that doctor again after my diagnosis. And I didn’t get to thank him for his gentleness and listening ear. I do remember however that one of his final remarks to me was not to listen too closely to internet activists. I’m not sure what he meant by this exactly as he didn’t go any further. I suspect he’d come across an article by one of the now discredited PACE trial authors, or, the colleagues he consulted included the doctor I’d spoken to on the phone for my sick note that time. I am now one of those activists. 

Since being welcomed back into the ME community I’ve seen very little in the way of aggressive or threatening tweets but I have found an army of people who are passionate about educating others about the realities of this condition and the dangers of CBT and graded exercise. My diagnosis, and its relative ease has led me to often ponder as social workers do, about hidden institutional cognitive biases in health care which lead to discrimination. As a white, married, cis gendered heterosexual professional male, I was aware of the power dynamic for me in trying to persuade my doctor that I had ME. Last year I was part of a twitter discussion about diagnosis for people with ME. Overwhelmingly, on an anecdotal level, women took much longer to be diagnosed than men, and I also read about the specific challenges for black women in navigating chronic illness, diagnosis and the health care system. I wonder if my GP would have been so quick to diagnose me if I had been a young black single mum? Or a young Asian man? How much do subtle ingrained institutional cognitive biases impact on a doctor’s judgement, whether they like to admit it or not?

When reflecting on my interactions with doctors over the last 3 years, I feel that my experiences could have been much worse. On the day that I went home from work at lunch time, feeling like I had the flu without the cold like symptoms, I tried not to entertain what this might mean for me. My stress levels went into overdrive which probably didn’t help. I had family and responsibilities and wasn’t 13 anymore. What I didn’t expect was that really very little had changed in 20 years since I was last in the ME world, on a macro level for those fighting faulty thinking. In fact things had perhaps become worse. I had been vaguely aware of the PACE trial (research based on bad rationale) during those years through facebook friends who had ME but I didn’t realise the aggressive extent to which ME was trying to be claimed as belonging to the field of psychology. Which makes finding an affirming therapist a tricky job!

My relationship with my current GP of almost 3 years is good. We don’t often talk but when we do, I always come away from an appointment feeling that we’ve worked together on an issue and that he sees me as the expert in my condition. I can only hope that this partnership approach becomes more widespread and that some form of creative and holistic work, if not a total pedagological approach, becomes the norm within primary care in the future. Believing someone doesn’t have to cost anything but can potentially have a significantly positive impact during those vital early months of ME when the most essential thing to do is rest. 

4 thoughts on “ME and health and social care

  1. This is really good to read. You echoed so much of my own experience when you started to discuss how women take my car to get diagnosed and all the other and related to that. It made me really think it took me of 15 years to get diagnosed. I was 23-year-old single parent, who was trying to hard and very stressed according to the doctor. And to answer this I can honestly tell you with regards to the medical profession I definitely have post-traumatic stress disorder. Then last week when I finally was able to speak to a medical person who actually knew more about ME then I did and I didn’t make me feel judged or disbelieved or anything negative, when I got off the phone call I broke my heart crying but not for the same reasons as I usually would. I don’t know any other health condition where a patient feels this way.

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  2. What a fantastic post. Really well written. ‘…was something going on in my mind that I’m somehow just not mastering was devastating…’ This echoes my own experience. I was told by a family friend, a well respected ( and wonderful) GP that ME could be emotional based on research she’d read from Oxford ( probably the PACE trial). It’s not that I’m afraid of stigma- I am happy to discuss the fact that I’ver suffered from depression adn anxiety – but the idea that I was to blame for my illness, or not recovering from it, or that my judgement was impaired because it wasn’t what I felt it was – was so totally devastating I can’t explain it. It really held me back.

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