Three years ago I read and reviewed Jessica Taylor-Bearman’s first book. The book chronicled her adolescence living with acute, severe and bloody terrifying chronic illness. Namely ME. I knew that Jessica had experienced a slow improvement lasting beyond the tentative first steps of the first book and having connected with her since, I was keen to learn how that improvement has progressed. I was also rather curious to learn how she’d met her husband!
My own health has fluctuated a great deal over the last year and I found that half way through reading A girl in one room, I just stopped. My own body had crashed and I was faced with the painful reality that my condition had slipped from improving – moderate ME to, on many days, floating about in severe ME territory, spending much of the day in bed and conserving what strength I had to welcome my kids home from school and ensure that they ate food to stay alive!
So my reading of A Girl In One Room was completed in two parts, almost a year apart because you really do have to be in the right mindspace to read either of Jessica’s books. While I may have at times had cognitive energy to read her follow up memoir, I didn’t have the emotional energy. So much of the early stages of the book outline challenge after challenge for Jessica and her family. Following the abuse and ignorance Jessica experienced during the period of her first book, comes more gaslighting, lack of empathy and limited resources for support from health and social care professionals.
When you personally have lived through similar, albeit less severe, rejection from the health sector, it feels heartbreaking to read Jessica’s story because there won’t be a single ME patient who cannot identify with many of the themes. I wonder if I had to wait to be in a better headspace and improved health to read on because often surviving life with ME means not dwelling on the reality of how very horrific the illness is. When we empathise with someone else’s story, we also hold up a mirror to our own existence. And sometimes we see things that we would prefer not to see. Jessica calls the insidious nature of the illness, the ME monster. Living with ME really is a horror show, it’s a daily wrestle with a living nightmare and Jessica’s starkly honest and open writing exposes the monster for what it is, a cruel and unforgiving beast.
The second part of the book sees Jessica overcome obstacle after obstacle, from her first date, to public speaking, winning awards for her charity work and finally walking up the aisle. Each and every obstacle, while met with perseverance and determination comes with significant repercussions and Jessica’s writing highlights how those of us with ME do not battle with the illness, rather we live strategically doing our best to minimise its tyranny in our lives.
One theme that runs strongly throughout the book is hope. Jessica constantly demonstrates how hope for something better keeps her going in the darker times, she set herself goals, and whether she succeeded or not, she would not give up. This resilience isn’t born out of foolhardiness but years of learning how to live strategically with the ME monster.
I loved reading how Jessica met and developed a relationship with her now husband and being reminded of how vital the internet is for developing and maintaining relationships when, as people with ME, we’re stripped of the ability to access social environments. It’s an timely lesson not to minimise the importance of the online world in meeting our emotional and social needs.
If you read Jessica’s first book, I’d highly recommend this second one. If you haven’t read the first one, I’d suggest making time to read that first, and be aware that both books deal with themes which may trigger emotional responses while reading. These books are an excellent resource for helping people gain an insight into and empathy for those of us with ME, and those with severe ME in particular. After I read Jessica’s first book a lecturer from the university of Sunderland visited me as she wanted to hear my ME story as part of her research. I gave her my copy of Jessica’s first book with the hope it would be shared around the university facility, because it’s those very institutions where we need understanding, compassion and empathy to grow so that academic influence can be cascaded throughout the fields and health and social care.
Books may end on happy notes, but lives go on. The ME monster stalks us at every moment and each day is a new challenge for survival and recognition. We might not be able to fight the ME monster, but we can dwell in solidarity as we find ways of avoiding its advances, together.
I watched a fascinating short you tube video recently about liminal spaces and how they’re used in cinematography and I haven’t stopped thinking about it since. The illustrations of films where these concepts are used were interesting, The Trueman show and The shining in particular. But it was the general concept which has hovered around my mind over the last two days, and particularly in relation to living with ME and chronic illness.
The you tube video outlined three forms of liminal space; physical, temporal and emotional, before discussing a form of universal back room liminality. But what is liminality, and why am I obsessing over it? I think it can be most easily understood when thinking about physical transitional spaces: a waiting room, a hotel foyer or hallway. Spaces that are sparse, functional but non-descript, a little creepy perhaps, especially when there is no one there. They aren’t there for any reason other than to transition you from one place to another. You’re not meant to spend time there. I remember growing to love Subway food when I lived in Canada in 2000. When I returned to the UK I was excited to see Subways open up where we lived and I used to grab a sub on the way to work as a lunchtime treat sometimes. But something stuck with me, which a Canadian friend told me about Subway premises… that the dining areas are designed to move you on as quickly as possible. They want people eating their food, but they don’t want people staying for longer than it takes to eat the food and bog off! The mustard patterned wallpaper, bright lighting and only-just comfortable seats were proven to prevent people from wanting to spend any enjoyable time socialising there and so they could maximise customer traffic. You come, you eat and then you leave. Functional. Transitional.
So as Google states, liminality is a state of being on a sensory threshold, or of relating to or being an intermediate state, phase or condition (Merriam-Webster). It’s a state of being between one thing and another.
I often feel like I’m Truman from the Trueman show. If you haven’t seen it, it’s an excellent movie, even if you don’t particularly like Jim Carey. Trueman is a man who discovers that his whole life has been lived within a small geographical area which is all a set, with him as the star of a reality tv show. While I’m not on tv, I am stuck in a pleasant rural physical bubble which has its boundaries at the farthest distance I’m able to drive from our home, which isn’t far. Like Trueman, I’m prevented at every opportunity from leaving the dome around my life.
With ME, at some point in the early stages we find ourselves shoved into a temporal liminal space. A time shift into an in-between life stage, a marker in time. Our bodies become a physical manifestation of the eerie empty hallways of The overlook hotel in the Shining. It could be post viral fatigue, just stay in the empty hallway a little longer, it might pass. As time passes, the horror show becomes more apparent and we’re trapped in a physical space, our home, which we always viewed as a staging post, a base camp for the life we previously lived. Time becomes wibbly wobbly. Hours pass like years but a year passes in the blink of an eye and emotionally every day becomes transitional. We’re transitioning into a heavy PEM/PENE crash, or coming out of one. We’re testing the waters of increased energy and imagining all the possibilities that might be open to us, while knowing the reality, that we’re likely to open a door leading us out of the nightmare only to be faced with another empty hallway, or bigger monsters.
When considering liminality, it feels like living with ME means we’re always on the threshold, but never knowing what’s on the other side. Our lives are reduced to swathes of emptiness, to functionality. There’s mustard coloured wallpaper lining our emotions. We’re not meant to spend time here but despite the odds we exist on abandoned railway platforms and huddle down in the corner of bus shelters.
We see others become stricken with serious physical or mental health conditions, enter their own disorientating liminal space in life, receive treatment and support, make a full recovery and leave the ferry terminal, writing a book about overcoming in the process. And it’s heartbreaking. Not that we’re not happy for them, but that we’re stuck here, running through the lift doors, like Trueman, only to find no lift shaft, but the backstage of a movie set. Genuine recovery for 95% of us is just an illusion. Life with chronic illness leaves us questioning ultimate reality and whether being stuck in the inbetween, in no man’s land, in purgatory, in limbo, a space between life and death is a place in which we really want to exist.
Can we hang on in our liminality long enough? Can we somehow live with the mustard wallpaper, the endless maze of hallways, the train that never comes, in the hope that one day it might.
While we age and we find more white hairs and wrinkles, can we abide the nightmare just long enough to maintain hope that we can journey again? Can we find joy in the small achievements that others take for granted (I swept the floor yesterday, yay?).
In the UK, our government appears to be finally taking a biological model of ME seriously, research is finding that microclots may be responsible for our exhaustion and a large scale DNA research programme is underway. We’re decades behind but things really could change for the better. There may not be a better day ahead, that’s the painful reality of ME. Hope itself is a painful thing. But we can stare the monster down while the crack of light grows brighter. Let’s stare the monster down together, for just another day at least.
I watched the latest M. Night Shymalan film last night. I’ve always found his movies to be a compelling mix of intrigue, horror and, ultimately, an examination of the human condition.
One of my favourite films of his is The Village, about a 19th century settlement in America, where everything is not as it seems and the elders of the village do everything in their power to withhold the truth of their reality from their younger members, who are oblivious to the wider world they’re living in.
Living with ME, it often feels to me like my life stopped in 2018 when I became ill and while society moves on I’m trapped in a bubble with little interaction with the outside world. Living on a farm has its great benefits, but I can also go for months without seeing anyone other than my family, the postman, amazon and supermarket delivery people and the school bus driver. My existence in reality is held together by the superfast broadband connection coming via a transmitter from the house over on the hill. We work on a relay system, so if someone in the network trips their power, we all lose our connection. Such are the challenges of rural living. We lost power for 5 days during storm Arwen in November and suddenly I realised how isolated I could feel so quickly, and cut off from those daily interactions of twitter and Facebook which keep me going.
Isolation is a theme of Shymalan’s latest offering, Old, whereby a small group of people on a luxury holiday are taken to a beautiful secluded beach by a member of the hotel staff for a day of relaxation. Things quickly start to go wrong and they find they can’t leave the cove or contact anyone to get help. Soon they discover that due to some strange phenomenon, time is passing more quickly and they’re all aging at a concerning rate; children become teenagers within hours and the adults find themselves dealing with sight and hearing impairments that are associated with older age. The film carries the usual discomfort that comes to be a signature of Shymalan’s art but it also reminds us of our own fragility. We are forced to look at ourselves and reflect on how aging impacts us.
When I became ill with ME as an adult I was 36 years old. I turn 41 this year and have been ill for over 4 years. Like the beach in Old, those of us with ME feel stuck in a place (metaphorically and physically) which is separated and running at a different pace from the rest of the world. Our cognitive function can decline like that of older people, and every step we take is a reminder of how our bodies are shutting down as we live with joint pain and breathlessness amongst other things. I have a lot more white hairs than I did 4 years ago and I’m noticing deeper wrinkles on my face. I mean, these things are normal for my age, but all the life I would have lived over the last four years is not reflected in those wrinkles, which have been furrowed deeper by headaches and tremors I never wanted.
As is the case with Shymalan flicks, there’s a twist. Of course the people aren’t on the beach randomly but were specially and, unknowingly to the individuals, selected by a big pharma corporation, who discovered the cove’s unique properties and are using it as a lab to covertly test treatments on patients and see their long term effects in super fast time. A woman died on the beach, but the dark success is that scientists find a treatment that will significantly help thousands of people.
The film asks us to consider heavy philosophical and moral themes of utilitarianism. Do we allow, or instigate the suffering of some individuals to initiate a greater good for a much larger cohort within society? Is the motivation of big Pharma about improving the lives of people, or ultimately to make money? We see these tensions take place across the world and currently with the war in Ukraine where global powers are allowing horrific suffering to prevent potentially global and catastrophic suffering. The world is currently wrestling with its morality in real time and it is painful.
For those of us living with ME and chronic illness it feels like time is running out. Our lives have been swallowed by a time trap, we can look in the mirror and see the effects of suffering in our bodies, we feel old. We mourn for what we’ve lost, and we don’t see a way out as biological research funding is meager. Maybe once we’ve campaigned with what little strength we have, and tried all the things that might help, all we can really do on a personal level is sit on our own beaches and appreciate the beauty around us while the life we knew rapidly disappears into the increasingly distant past.
It’s a number of months since I blogged. Its been an interesting time for me in my ME journey. I had a much improved three months in the spring through to the summer. My ME went from the bottom of moderate levels into top-level moderate and into mild. I was able to get out a couple of times a week, rather than maybe once a fortnight or once a month prior to that. My cognitive dysfunction was much improved and I was even looking at undertaking a really low level of auditing work as a consultant. It gave me a potential step back into the social work world. My improvements were thanks to an existing drug that I spoke to my GP about, where some people had seen significant long-term improvements in the US. My Aripirizole journey is perhaps for another blog, as it’s a controversial topic in the ME arena as the drug is traditionally used in the field of psychiatry for conditions such as schizophrenia. It reduces inflammation in the brain and this is what seems to be helping folk with ME see improvement. The short story is that it helped me immensely for about three months until it didn’t anymore.
During those three months of significant improvement, not only was I at the point of considering work, but it was like my creative juices started flowing and I regularly played my guitar for the first time in a long time. I found myself writing songs and a friend brought a load of recording equipment that his band wasn’t using. I’d spend time learning recording and editing software and crudely begin to record a number of songs. Some ok, some not so great, but all the songs were an expression of ME/CFS and its impact on sufferers. The songs were deeply personal to me but as I started sharing them online I found that, despite my ropey singing voice, people were relating to them on a deep and universal level. I made new online friends during this time and someone offered to produce and master a song for me and we went on a creative journey together despite being thousands of miles apart.
Then the medication stopped working and I was back to barely surviving, never mind executing the various fine motor skills required to play guitar. I was in a hole and it felt like it was going to be a real mystery as to whether I was going to get out again. I’ve seen some small improvements but each day requires micro-management of activity levels again.
My music mastering wizard friend in the US, Treesha, recently got in touch about returning to a song that I sent her earlier in the summer and which she was keen to complete and she’s done an amazing job. It’s called ‘Another way’ and for me, while rather bleak, expresses the reality of ME and Post Exertional Malaise, or the ‘crash’.
‘I find myself in this hole again, deeper than the deepest of seas, it’s like I’m on the voyage of the dead again, put here by mistake. Legs gone, head gone, hope gone. I can’t keep going but there’s no way to stop. Perpetual motion, eat, rest, sleep. I’m thankful for this thunderstorm. It tells me that I’m small. Legs gone, head gone, hope gone.
And if there was another way, I’d take it.’
There’s been a bitter battle waged over the summer and into the autumn months between those of us with ME, who want harmful treatment practices to stop, and those who appear to want to continue to perpetuate harm through medical gaslighting and dangerous graded exercise as we continue to wait for the publication of new NICE guidelines. The psychological impact of this battle has been so emotionally draining for so many of us. Sometimes it is easier, if not essential to stay away from the battle for emotional self-preservation.
If there was another way, I’d take it.
Various professionals of the bio-psychosocial persuasion have talked about Long Covid and ME in terms of a psychological block that is preventing patient recovery. The reality is, however, that this is a real biological condition and it’s acutely hurtful to suggest that we don’t want to take steps which might lead to recovery. My three months of improvement were amazing. I was immensely grateful for that time, just being able to start and walk further, to feel a lightness in my legs that I hadn’t experienced for so long. Why wouldn’t any of us want that? There’s some deep pessimism about the human spirit to lump ME and other chronic illnesses into a specifically psychological framework. If there was any way to get out of the ME hole beyond managing activity levels to see minute levels of improvement, any opportunity whatsoever to live a life with purpose and meaning beyond just surviving, we would grab it with both hands. Yes, for some with ME, depression is an issue but it’s a result of the state of being that ME leaves us with. So often depression can be due to environment or circumstances but I don’t believe that anyone chooses to remain in this state of living if there was an opportunity for wellbeing.
So my song is about affirming that with ME, we’re in a hole, it feels like we’re on the voyage of the dead: alive but yet not living. If there was another way, we’d take it. We don’t reject CBT and graded exercise purely out of laziness or pessimism, we reject them because we know they won’t contribute to our recovery and are harmful. We need solid biomedical research so that we can have access to treatments that may genuinely help, rather than searching for sticking plasters that are unlikely to offer relief.
For the time being we have to work with what we’ve got. But believe us when we say, IF there was a way out of the hole. We’d take it.
I wrote a new song during ME awareness month 2021 and thought I’d share a little about it in this blog.
There were so many people sharing their experiences of ME in so many ways during ME Awareness month this year. I particularly enjoyed the MEAction artist’s salon which was an honour to attend, and seeing Anna from ME, Myself and I breaking through fundraising records with her Blue Sunday Tea Party for ME initiative. I’ve also enjoyed reading ME Association Champion Blogger posts throughout the month. While some expressed frustration that there appeared little media coverage, what struck me was how important the month is in building community. I’ve made two new music friends this month and after seeing my video of a song I wrote, we’ve discussed making music together! One friend even took a recording of my heartbeat and made it fit a song I’m working on while a third ME friend is going to help with playing bass!
So for me, ME Awareness month this year has been about affirmation and solidarity.
I wrote the song ‘Dreamers in Disguise’ while thinking collectively about the global ME community.
We are finite and we are limited. We can grow but we can’t catch the light. We are crowded in but we isolate. These days they are unforgiving.
We are reduced and we are hidden. We see beauty through a darkened lens. We are hopeless but we are hopeful. We are not what we used to be.
I wanted to capture some of the feelings and universal experiences that are lived out by those of us with ME, but I also wanted the song to be a call to the medical community to not ‘hammer down the nails on us’ and to ‘give us empathy and see, just how much it means to me’. When empathy is used during an interaction with a medical professional (or anyone for that matter) towards someone with ME it makes a huge impact. I love to hear when someone shares online about an occasion when someone has acted towards them with compassion. While there may be little in the way of treatment, an ear that attempts to understand can be a soothing balm at times. Every step towards awareness is a step away from stigma and ignorance.
We are dreamers in disguise. There is so much potential among those of us with ME. And these things are said so many times, but while trying not to sound cheesy, so many of us are dreaming of the life we once had, or a new life that we are keen to get started.
This song collapses into a bridge of woahs. Sometimes I think songwriters use a woah or two to fill space in a song when there’s no decent lyrics to be found, but for me, these were cries of angst for all of us who have been impacted by ME, but also maybe cries that call for unity, and a demand to be heard. A ‘woah’ can express a lot of things.
Before the final chorus I included a spoken word insert:
My dream may be a stunted dream, but it is a dream nonetheless.
We’re allowed to dream of better things. Sometimes our dreams are as simple as making a meal or sitting in the sunlight. They can be dreams that are reined in at times. But they’re dreams nonetheless. I’ve been reading Jessica Taylor-Bearman’s new book, A girl of one room. She had a seemingly simple dream to stand up. And she got there! To others, our dreams would seem silly. My dream is to work a few hours a month in some remit as a social worker. It actually seems like that may be a possibility in a behind-the-scenes remit for me in the medium term future: something I didn’t think would ever be possible for me again. I’m excited but a little nervous about managing a small amount work alongside ME but thrilled that I could possibly salvage some embers of a career I thought might be lost.
Some in the field of psychology may say that those us with ME are choosing, whether consciously or not to escape the challenges of the world. The reality couldn’t be further than the truth. We’re dreamers in disguise.
Link to song lyric video is at the bottom of this post.
I’ve often felt that the concept of being ghostlike was particularly relevant with regard to ME. Google defines a ghost as ‘an apparition of a dead person which is believed to appear or become manifest to the living, typically as a nebulous image’. So often, living with ME, you feel like the image of a person, a dead-like person. We’re like a shade from greek mythology only a grey imprint of the person we were. Sometimes I feel like I literally look grey in the mirror.
We’re like persephone, the beautiful god who was bound to live in the underworld for so much of the year before briefly returning to the land of the living, only to have to return to her home below in an endless cycle.
I wrote a poem around the time of my diagnosis called ‘ghost of me‘ and this song builds on that theme.
The song starts with the idea of being rooted and planted like a tree, existing but immobile. For me, these lyrics have duel meaning. There’s an active frustration with being rooted to the spot (I have rarely gone beyond the end of our farm track in the last 18 months) and the isolation that it causes, but there’s also the learning and growth that comes with being rooted as a person. To know where you came from and what values are important to you. We carry on to lines about waiting while others dance and play. I think of my children who live to adventure and explore and how I can’t be part of that process, only to watch and vicariously observe. My wife had a party for her 40th last year and I left well before the real boogying began!
One of my favourite things is getting out into open countryside so walking has been an important part of my life. Growing up as a farmer’s son I remember trying my hardest to walk alongside my seemingly giant dad over the rig and furrow of the top side field and always having to half-jog with his strides on a spring morning while looking the stock. My dad and I have often talked about exploring walks in our local area, looking at maps. I’m just saddened that we never made more time before I got ill.
One of my favourite lines from the song is the idea of being a preacher without a choir. This isn’t about religion but an analogy for ME patients preaching our loudest to anyone who will listen about the terrible plight of ME and the need for funding and research. For me the choir would be the medical community as a whole who aren’t generally there to endorse and promote our message. And many of those who should be supporting us from the field of psychology are out on the streets effectively encouraging people not to even enter the building with their misrepresentations.
Yet despite the melancholy, I wanted to bring some light. I have seen some improvements over recent weeks as I’ve tried a new medication to fend off the post exertional malaise. It’s given me a glimmer of hope that there could be further milestones along the way for the ME community.
“Sew me into a new dream”
My daughter, wife and I have been watching the great British sewing bee recently. I never knew I’d become fascinated with learning about how our clothes are made! We watch intensely as we wonder whether the mens’ jacket or ladies’ dress is going to be finished on time. And when it’s not there are many tears and cutting criticism. As a community we’re desperate for a dream to be sewn into but we’re too ill to make our own dreams come to fruition. This is a call to our family and friends, to the research community, to our own GPs. We need advocates to stand up for us. We also need each other, to help us to keep believing that there may be better days ahead. If there is anything that the ME community is good at, it’s being there for each other. I’m forever grateful for those friends I’ve made along the way who keep me going with silly memes and encouraging words.
My song ends with the chorus, bringing us back down to earth and the reality that breaks through our dreams. I thought the analogy of a mirage was fitting. We look inviting, we can often look really healthy, yet get close and our lives consist of thinking that it would be nice to have fresh pillow covers but lacking the energy, of shoving a ready meal in the microwave or eating cereal for lunch because our arms are too heavy to make a salad or a sandwich.
Thanks for taking the time to watch and to read this blog. I’ve really enjoyed slowly completing this project over the last couple of weeks. It’s involved my friend showing me how to use his recording equipment in a cold garage, hours of downloading and learning new software and asking my brother to add his deep singing voice to the bridge and chorus. I’ve probably pushed my energy envelope off the table but I have a sense of achievement. My hope is that the heavy nature of the song will help people to grasp just how debilitating ME is for so many of us.
This ghost of me rages behind the front door, waits in the spaces between failure and the cost, breaches the chasm of decades fulfilled and creeps behind my weary shoulder. This ghost of me drags its feet, delays the party train and relegates me without permission. Who do you think you are, really? Who are you going to scare?
This ghost of me thinks it owns this day, haunts my set mind and tries to agitate. I’m not going to play your joy draining games. This ghost of me reminds us of graces lost and the mud at the bottom of the dene in which I’m stuck. Who do you think you are though, really?My graces are richer today than ever before. I find peace in the places you roam, this deal is not done, and whom do I fear? Not the ghost of me.
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.
For reference, I have a nearly 13 year old daughter and a nearly 10 year old son and I wrote this mostly before the Easter holidays. I recently tweeted about parenting with ME and asked for hot tips. I’m going to write a follow up post including some of those responses, so thanks to those who contributed!
Before I begin, I wanted to acknowledge those who have ME and for whom having children is not a possibility. By writing about my parenting experiences, I hope not to exclude from my blog those who grieve the opportunity to have children despite this particular blog series having that current focus.
Yesterday was a tough morning for me and I had one parenting fail after another. I don’t always know how each day is going to pan out energy wise and sometimes I don’t realise if I’m having an ME crash until I’ve got up and put the kettle on. My kids are great, and have a good understanding of my illness, but it’s a lot for them to carry. With them going back to school and getting used to the change in routine, there’s a lot for all children to deal with right now. There’s fatigue for them too in managing the effects of dealing with busy classrooms again, navigating friendships after time apart and adjusting to new expectations around masks, testing and social distancing. So in our house we’ve had a couple of big morning meltdowns recently despite our best planning. That’s really normal and to be expected but it can have an adverse effect on our health as the PEM kicks in.
I think mornings before school are the most challenging time of the day for parents and children to manage. It’s our job as parents and carers to help regulate children’s emotions and provide a safe space for them to be able to deal with transitions and to vent emotionally, and this job starts the moment we get out of bed. Often children don’t have the ability to put into words what they’re feeling in their body about the day ahead so it comes out in anger or a stress response. As a professional I’ve spent thousands of hours sitting with foster carers on sofas and at kitchen tables, listening and supporting them in behaviour management and helping carers to provide a secure base and a positive environment for the children in their care. If application of head knowledge on parenting was so simple, social workers and psychologists would have the most well adjusted and emotionally intelligent kids in any community. I’m pretty sure that’s not always the case. Sometimes children push our buttons, we can form unhealthy response patterns, get stuck in ruts, or end up going around in circles.
I’m sure most parents have some variation of these thoughts each morning before school…
Why can’t they just do the simple thing that I’ve been asking them to do for years?!
Why don’t they listen to me?
This is not the time for them to be getting stressed about something so inconsequential!
We need to be doing this right now, not that.
Why are they taking so long? I don’t have time/energy to drive them to school if we miss the bus!
It’s how we process and act on these thoughts and frustrations as parents and carers, and how we respond to our own stress that is often pivotal in how that busy hour or two before school pans out. Are we supportive and encouraging in our interactions, do we recognise the things that feel big to them or do we increase their stress levels by letting our own bubbling emotional messiness rise to the surface?
For anyone in a parenting role, the ability to respond to our children varies depending on our own capacity to function effectively. My greatest challenge between 6.50am and 8.16am is how I navigate interactions with my kids. With ME, the ability to respond to our children’s needs is hugely impacted by how much energy is in the tank, whether we slept well, or at all, how thick the brain fog is, pain levels and on some days, whether we can actually get out of bed. Sometimes my brain fog will mean that I think I’ve asked child no.1 or child no.2 to do something and then when I see that they haven’t done it, I’m using a firmer voice. When actually, that’s the first request and they rightly feel that I’m being unkind when they didn’t know I wanted them to do something in the first place. As parents, it’s our responsibility to help set the emotional course of the day for our children, but we can easily mess up their trajectory because of our own exhaustion. It’s no one’s fault, but we do need to think and act intentionally to achieve the best outcomes. And in the bigger picture if we can get those morning interactions right and things go smoothly, then hopefully the impact of Post Exertional Malaise on ourselves will be reduced because we’re not stressed to a frazzle by 9am and we have less cortisol, the primary stress hormone, and adrenalin flooding our system and increasing our heart rate.
Sometimes we need to find a way to step back, reflect on our own stress response behaviours and consider how we present ourselves to our children.
With ME, our condition fluctuates vastly at times and so does our ability to function. Exhaustion has a huge impact on our ability to think straight. One of the helpful things I remember from training by a child psychologist was the analogy of, as a foster carer, being an actor on the stage of your home. I think this can apply to parenting generally: the need to put on a hat and leave your own emotions backstage until you have the chance to provide self care and process them effectively. This isn’t about negating one’s emotions in an unhealthy way, but to recognise how important it is that we help our children by co-regulating their emotional journey. We’re the adults. When we respond to our children with warmth one day and bluntly or harshly the next with no changes from them, we risk leaving our kids open to forming anxious or avoidant attachment styles. This is heavy, tough stuff and we can carry a lot of guilt for not being the parents we so desperately want to be. Yet it’s so hard to feel in control at times when we don’t know up from down and we have wobbly legs!
I’m writing this blog for myself to process some of these themes, as much as for anyone else. But I also want to reflect and realise that I’m mostly doing the best I can. You’re mostly doing the best you can. When I’m grumpy with my kids, I know that’s not me, it’s the exhaustion. How do I perform as an actor when I have my hands tied behind my back?
Some days are just disasters and can’t be avoided. Some days just naturally go well and the sun is shining. I think some days, when I’m feeling rough but not too crashy, it is possible to find creative ways to navigate to a positive day ahead without too much added exertion. These are some of the things that help…
Planning: my kids have stepped up recently to making their own packed lunches the evening before. We’re being more intentional about getting them to check they have all the clothes they need for the next day as well. If they have everything they need in the morning then there’s less pressure to find socks 5 minutes before they leave the house in a messy frenzy. Of course planning also requires that we have already found the energy to actually wash their clothes or check they’ve done it when you give them more responsibility!
Eye contact, physical touch and communication: we know what it’s like to feel like an ME zombie in the morning. Everything aches and the sunlight burns our eyes. The simplest option can be to go through the physical motions of completing tasks and just get through it until we can climb back into bed. Sometimes though we can forget to really engage meaningfully with our kids. A hug, pat on the back and eye contact don’t have to take much energy but can help our kids feel seen.
Music: some mornings as parents with ME we just need as much quiet as possible just to deal with the two hundredth alcohol-free hangover in a row. But I’ve also learnt that, on the mornings I can deal with music, it can create a positive environment. I have a ‘joy rising’ Spotify playlist of happy, boppy songs which I play sometimes. My daughter might dance a bit between tasks and my son will likely insert the word ‘fart’ into lyrics.
Humour: this can make a huge difference in the morning and can turn the emotional temperature in your favour. See fart songs above. It’s important to be mindful when it’s not the right time to instigate humour. As, like Monty Python’s deadliest joke, we need to be wary of weaponising humour in our interactions with kids.
Silence: sometimes silence is good. Sometimes it’s needed. At risk of contradicting myself, natural, unforced silence can be beneficial at the right times. As a person with ME, I’ve fallen in love with silence. Moments of silence in the middle of a storm can be helpful for children and young people to centre their thoughts and all you can hear is the crunching of cereal. It’s about sensing what children need on any given morning and trying to find the balance when different children need different things.
Warmth: Being physically cold will affect most people’s mood. Creating the right physical environment can really help children and ourselves start the day in a more positive mindset.
Tag team: If you have a partner who parents, communication and recognising your strengths and weakness can be really important. Being clear about roles and boundaries helps kids to know who to go to at different times.
Modelling: Its important that we are able to model healthy emotional restoration with our kids. When I can stop and reflect and realise that I’m being unduly harsh or snappy with my kids, I’ll look to apologise and explain that I’m struggling that morning. While it’s not always easy to calm our own minds, these moments of restoration can ease tension and model positive strategies to manage stress.
Ultimately, parenting with ME is really tough. For me, lockdown and home learning was a time of experiencing huge guilt at leaving them to the laptops while I rested and my wife worked hard from home upstairs under new circumstances. While we can feel that our kids are being negatively impacted by our illness and them having reduced opportunities, it’s also important to remember that they are learning a huge amount through our illness. They’re learning empathy, compassion, emotional intelligence and a whole bunch of things that other kids in school won’t necessarily learn in the same way. Somehow gaining insight into suffering from a young age also brings maturity. It’s a burden we may not wish on them. But I think it often breeds resilience and that’s something all kids need in the uncertain times ahead.
If things are so tough that you’re struggling, please seek support, whether that’s informally through needing to vent to a family member or friend, or practically with care tasks or behavioural advice. Social care may seem like an exhausting minefield to navigate, and often it is, but there is the potential for support through direct payments and signposting. If your child supports you, they may well be a young carer and there are organisations who do excellent person centred work locally with young carers.
I haven’t blogged here for a while. I’m not sure if it’s just been lack of inspiration, or the busyness of trying to keep my head above the water with my kids being at home and trying to support them with remote learning, while trying to find time to rest and my wife also working from home so there’s always a buzz around the house. I know a lot of families have struggled, as we have at times, but it’s also been a time of bonding and enjoyment for us.
We do have the benefit of living in the countryside and the kids will often go out and take the dog for a walk without me having to worry about them, so we’re in a very fortunate environment to be living in lockdown!
While I haven’t blogged much recently, I did feel that I wanted to pick up my guitar again and I received new strings for Christmas. I felt an urge to write a song this past week, and having not played or sung much in the last year, it felt refreshing to briefly have the energy to play and record what I’d created.
My inspiration for this song came out of the recent difficulties people with long covid are experiencing in finding that they, like those of us with ME have found for many years, are often being disbelieved or expected to exercise their way out of their condition. Those of us with ME have great empathy for long covid patients and had a sickened feeling when we discovered that graded exercise is included in recommendations for recovery. So many of us were very grateful for the recent article by George Monbiot highlighting the battle those of us with ME have faced and how effective research needed to be a high priority for both cohorts.
So my song is about medical gaslighting and ME, but it could be applied to any circumstance where there is abuse of power. While we can’t be encouraged that there will be a culture change any time soon, we can look to those in our communities who shine a light for justice and hope. One of those people for me is Whitney Dafoe, a young man with severe ME who has recently been able to write his thoughts down and be a massive encouragement, that through the work of his father, prof. Ron Davis at Stanford University and his team, there just may be progress in finding diagnostic tools, and somewhere down the line, eventually an effective treatment. We can also be hopeful that the forthcoming DecodeME study will be fruitful as we post our saliva samples for inclusion in the year ahead.
So, never give up dreaming. When I think of the things I want to do if ever I get the chance to recover, they are simple things… Hill walking with my kids, a night away with my wife and maybe the odd folk gig with my brother. I’d love to return to my social work career, but that’s not a priority when compared to the desire to do the things that make life worth living.
In the meantime though, it’s our own illumination that keeps us going. I’m forever grateful for my ME friends who just get it and how as a community we keep each other going and bring light despite the darkness.
Runaway Runaway They got your head So runaway runaway You’ll keep your heart Don’t play the game play the game You can’t keep their healing
Runaway Runaway They got your head So runaway runaway You’ll keep your heart won’t you stay won’t you stay With me, tonight we’re dreaming
Tonight we’re dreaming
Skip the park and the play There’s no returning There’s no lamp and there’s no path Just our illuminating Just our illuminating
Hold true, they don’t have you where they want you Stay strong because you have it all inside you So never give up dreaming