Whose body is it anyway?
Science, soul and the search for answers
This piece is perhaps slightly different to some of what I write, in that it is intensely personal, but is also a deeper dive into my journey through chronic illness, hidden disability and autoimmune disorders. I don’t know the answers, God knows I wish I did, but I hope this helps others who follow a similar path to feel less alone, and perhaps to give those who support us some extra insight. It’s a bit sweary - but those who know me know I love a swearword (and also there’s some anger in there too folks - keeping it real!!!)
I’m going to tag it with a hashtag or two (get me) #chronicillness #hiddendisability within my Lemon Soul so if people want to keep track of these - that may make it easier.
The body keeps the score
As my body dances its merry dance through health and illness, it continues to delight, baffle and frustrate me in equal measure, whilst also providing me with a source of great wonder. I marvel at its ability to withstand bathing in ice, its capacity to hold emotions, its strength and fragility, its capability to heal...sometimes. Moreover, I wonder about how little we truly understand about our own bodies, and the indisputable connection between body, mind and soul.
One of my all time recommended books on this subject is‘The Body Keeps the Score’ by Bessel Van Der Kolk. I have mentioned this book many times before, and I’m sure I will continue to do so as I wholeheartedly subscribe to its ethos of the ‘mind, brain and body’ connection, and also the notion that we hold trauma physically as well as psychologically. I have no doubt whatsoever that this is what has happened to me. And I know my own body...
...or, do I?
The trauma imprint
The impact of trauma on the body, as well as the mind, is something I have questioned so much. In the aftermath of my brother’s death and the trauma surrounding my daughter’s birth, my health took a long, slow and painful dive into chronic illness, and there it has remained. I was diagnosed with an autoimmune disorder in my twenties, and they run in my family, so although the rest of my health deterioration didn’t happen until after the events that changed my life, there was a blueprint of vulnerability in place.
Many professionals have been involved in my care over the last ten years – from when I had the luxury of private healthcare to being at the behest of the NHS, but not one of them knows my body like I do. Not least, because nobody ever looks at the situation as a whole. I have witnessed and received great care from the system at times, and God knows the drugs can work (see steroids and sparkles!!!) but there are huge gaps, and it is often chronic illness that falls into them. Whether that’s through not being believed, being dismissed, being belittled by what is still very much a patriarchal system (particularly as so many chronic conditions are more prevalent in women) or simply through lack of understanding of the complex nature of these conditions, the cracks are almost designed for us to slip through.
The way in which the western medical system is structured simply doesn’t enable a holistic view of the individual, or indeed take into account wider implications such as the impact of emotional and psychological experiences on the physical self. Van Der Kolk’s book brings to life some fascinating case studies covering everything from PTSD to how we become human, and how we behave under threat, as well as how to approach healing in ways other than through traditional drug treatments. This, I find particularly encouraging, and is something I’m eager to explore.
Without going into an essay on trauma, so many of us are exposed to it in various ways - either acutely through specific experiences, or over a number of years through a ‘drip feed’, and long term exposure to the fight or flight state of being has consequences we are just at the tip of understanding.
Like many people with chronic conditions, I’ll kinda try anything. In that vein, I saw a homeopath this week (now that is an essay in itself - watch this space). A lot of it went straight into the ‘batshit’ compartment of my brain, and I’m busy processing that at the moment, however one of the things that stood out to me was when I asked her about my current health flare - why is my body reacting now? Why after I’ve made all these life changes (left my career, sold my house, become a writer, given myself space to be healthy) am I still unwell?? Her response was that after so many years of being flooded with cortisol etc. my body was finally at rest, and because I am no longer in a state of hyper vigilance, the symptoms can manifest.
This makes a lot of sense to me, reminding me of all those times I’ve been on holiday, and started to get a cold just as I relax or step onto the plane. All my teacher friends get sick as soon as the summer holidays begin. Our bodies are excellent at staving off symptoms whilst we ‘manage’ our situations, but at some point, there has to be an outlet.
Mother knows best
When it comes to knowing our own bodies, I liken it to a kind of mother’s intuition – that feeling in your bones when what you are being told conflicts with your instincts in a fundamental way: My friend who didn’t accept her GP’s dismissal of her son and took him to A&E just before he fell into a meningitis coma. The period when my youngest daughter was repeatedly sick, and I was being fobbed off with it being ‘a bug’, but I knew it wasn’t. I knew her poo intimately in all its forms, and this was different. It turned out that she had coeliac disease.
How do we apply this intuition to our own bodies? Who even is the expert? Is it the person who has attended medical school for years and practiced for decades, or is it, in fact, the person whose body it is? Can we allow that it might be a bit of both? Whilst there are thousands of truly marvellous people out there devoting their lives to healing others, on occasion, the dismissiveness with which we can be treated on our own specialist subject: i.e. ‘me’, can be alarming.
I’m pretty good at knowing ‘me’. I’d even go into the Mastermind chair on that one, and challenge anyone else to get more questions right. *adds Mastermind application to ‘to-do’ list*
So why, when I’m confronted by professionals in the field of medicine, on the subject of ‘me’, particularly my health and my body, do I disintegrate into a jelly?
Oh captain my captain
In my former life - when I was able to sustain a traditional career, I was an air traffic controller, and an expert on aviation safety. I studied Risk and Disaster management at Masters level, and examined many cases where accidents were caused because of ‘professional deference’ - deferring to someone of higher seniority or rank for fear of questioning the ‘expert’. There are several classic case studies of junior pilots not questioning higher qualified captains during a flight, sometimes with catastrophic consequences. This is prevalent in some fields more than others, and much work has been done culturally to mitigate this, yet in some areas we remain firmly in deference. Medicine is one of those.
Some years ago, when I was suffering debilitating ‘random uterine bleeding’, I ended up sobbing in front of a consultant who insisted I have one type of treatment (chemical), when I knew I couldn’t cope with the hormonal disruption and adamantly wanted to exercise a different (surgical) option.
I will never forget him saying (in front of a medical student) ‘well I can’t examine you while you’re hysterical’, when I was at my weakest and most vulnerable, just needing care and understanding. I cannot believe he actually used the word ‘hysterical’. I wonder if he’d ever headed to work with so much blood falling out of an orifice between his legs that he literally had to buy new clothes on arrival at Waterloo station at 8am. Somehow, I doubt it.
Did I say that to him? Of course I didn’t. I just snuffled and shuffled and became strangely mute and powerless. What happened to my feistiness? My assertion of my rights? It all vanished. Where was my ability (to quote Caitlin Moran) ‘to be able to counter someone being rude to you in conversation, not with silent embarrassment or internalised mute fury, but with a calm '“Fuck you very much and Goodbye”’?
I walked out of there without an examination, sought a second opinion, and within weeks had a procedure (endometrial ablation, ladies) which literally changed my life. A couple of days of ash falling out of my fanny (almost comical), then not a bleed ever since. I find it so interesting that with all my confidence, experience and knowledge – I was unable to stand up to that consultant in that room. In the face of someone purporting to ‘know’ my body and my needs better than me (and bound by NICE guidelines and all that jazz), it was almost impossible.
When I wrote about him in my book, incidentally, I wanted to write that he was a total c**t, but I didn’t use that word out of respect for my mum who was one of my proof readers. He really was one though. Aah that feels so much better, I might even remove the asterisks next time.
The ‘too difficult’ pile
Later in the same chapter in my book, Breaking Waves, I write about how:
I have seen dermatologists, endocrinologists, rheumatologists, immunologists, gastroenterologists and any other ologist Maureen Lipman would be proud of. I have spent thousands on private GPs, tests, been in and out of the NHS system, been to Harley Street, the Priory and back.
The doctors say my condition(s) is ‘complex, multi-layered’. ‘Unlikely to ever find a cause’ [ergo no point trying]. When I am prescribed strong and targeted drugs for specific issues I ask, ‘can it be treated holistically?’ and am told ‘in a word, no’. I see their eyes glaze over when I mention fatigue, aches – I can almost hear their internal narrative ‘yes, yes, we’re all tired. Life is tiring’.
They have no fucking idea what tired means.
I am not the ‘tired’ that results from a long day at work and/or parenting – I know what that feels like. My fatigue makes me want to curl up on a wet pavement, to sleep on a pin, or leaves me sitting in the car for hours after I’ve parked in the driveway, unable to make it to the front door. My fatigue makes me want to drive into a tree just so I can go to hospital and sleep for a few days. I find myself deferential in front of them, submissive, silent, even though I am the expert on my body, depleted by my physical weakness and the daily struggle. I silently grieve for the loss of functionality I once knew.
[I wrote a piece about this recently, about how it is not just death we must grieve, and how our bodies need to process loss - whatever that loss may be].
For context - I have been diagnosed over the last several years with pernicious anaemia, chronic fatigue syndrome, eczema, mast cell activation syndrome (which one doctor diagnosed, and then another told me didn’t exist and therefore wouldn’t discuss it), histamine intolerance, fibromyalgia, benign positional vertigo, vestibular migraines, anxiety, depression and doubtless other things which I have probably forgotten, but which have contributed to me having to live my life in a non-traditional way as I cannot ‘work’ within the normative frames. I have spent literally months in bed, had periods where I was unable to walk without assistance, and also carried the burden of being a ‘flake’, a ‘let-down’ and the emotional pain of being doubted and judged. (I’m just grateful I’m good at spelling for when I have to fill in any form about my medical history).
Having made the life changes to allow myself to become well both physically and mentally, my body is perhaps now getting to breathe its sigh of relief, which has resulted in it currently screaming out symptoms of what is known as ‘chronic idiopathic urticaria’. The irony is not lost on me. So what does that even mean?!?!!
Well ‘urticaria’ is a posh word for ‘hives’ and basically my skin feels like it is on fire a lot of the time; is inflamed, angry and red. ‘Chronic’ indicates it is long lasting and recurring (yaay), and ‘idiopathic’ means ‘relating to or denoting any disease or condition which arises spontaneously or for which the cause is not known’.
Marvellous.
I will spare the gory details, the waking up bleeding, the ants crawling under my skin, but I will share these pictures just as an indication of what it can be like. This is hugely exposing for me.
The top two pictures are my torso, then my arm and my back.
What do the experts say?
The dermatologist (which is where I have landed), is a nice enough man, and I’m sure highly skilled in his field, but when I present like this, crying with pain, it is he who says ‘in a word - no’ when I ask if I can be considered more holistically. The expert opinion (on my body) is to pump it with strong immuno-suppressant drugs to try and control what is happening, the side effects of which include fatigue, vomiting, nausea and a whole host of other things. ‘But what about my chronic fatigue?’, I ask. The response is ‘I’m not here to treat that, I’m here for your skin’.
I do not want to take this drug at all. It is a chemotherapy drug (although I take it in much lower doses). I initially agree to a trial dose, but it’s that instinct again, it just feels wrong. I am not given any other options (although clearly I can choose not to take it).
When we met earlier this week, I was having a bad flare up, but mentioned to him that I was about to go on a juice retreat for a week. I had signed up my first juice retreat when in a state of desperation about my health a few years ago, and although it was initially scuppered by Covid, I got to go last year. I spent a week in the mountains in Turkey, purely on juice, and it was so wonderful for my body, I immediately booked to go back again. The dermatologist looked at me quizzically. I explained; ‘I’ll be detoxing - just drinking juice for a week’ (which is packed with veg so there’s actually a huge amount of nutrient input). I asked if I could delay any change in medication until I’d had my week there to see if things would improve.
I practically heard the dull scrape of the consultant’s eyeballs within their sockets as they rolled upwards in despair.
‘That will have no impact whatsoever’ he adamantly stated. ‘There is no evidence to suggest that diet has any impact on the skin, unless you are under the age of 1 or are suffering swelling around the mouth’. ‘There is no point considering changing your diet, just eat healthily. I’ll triple your medication and see you in two months.’
‘And don’t scratch’.
Fuck you very much and Goodbye. Awkward silence as I shuffled off (again) with faux gratitude and acceptance. I can only be thankful I didn’t mention the homeopath to him. His eyes would probably have disappeared so far back in his head he would lose the power of sight altogether.
(As an aside - DON’T SCRATCH!?!?!! Are you kidding me? I would literally need oven gloves gaffer-taped to me a la Phoebe Buffay with chicken pox).
What happens when you go holistic?
When I did the juice retreat last year, the picture below shows the change in me in just seven days. I have NEVER posted this picture publicly before, but I think it really does show the power of healing from the outside in, and from treating our bodies as a holistic system and knowing what is good for us, so I shall harness the bravery of Bryony Gordon, and put it out there, grey (once was white) bra and all. Next time I do a before and after I shall take better consideration of my underwear. And breathe in.
So tell me again that nutrition doesn’t make any difference and that drugs are the only option?
There has to be another way.
I feel in my bones that adding greater levels of toxins to my system to dampen my immunity is the wrong thing, that exposing my liver to damage is not the right way, that increasing my fatigue will not help me. I may end up doing it through lack of other options and pure desperation, but before I do, I am going to explore some alternatives. I am going to try and understand more about ‘me’ and get my Mastermind scores even higher.
I am hugely grateful to the medical system for saving my daughter’s life in the hours after her birth, and there are clearly areas in which consultants excel and do the most remarkable and ground breaking work, but for the thousands (millions?) of us swilling around in the hidden pool of chronic illness, it does not serve us well. And as for the dismissivenes...
So thank you for coming with me on this journey - it’s already been epic, but I’m going to hoist on my backpack and try a few other paths. Watch this space as I explore, and know that I wish you all the wellness in the world 🙏
Do you suffer from chronic illness, auto-immune conditions or a hidden disability?
Have you felt dismissed or that you’ve fallen through the cracks?
I’d love to hear from you - you are not alone 💛
Love & lemons 🍋
Em xx
“Having made the life changes to allow myself to become well both physically and mentally, my body is perhaps now getting to breathe its sigh of relief” literally as I read this statement, my body breathed the huge sigh of relief ! I simply cannot wait to meet online with you this Friday and chat in person....we have so much to talk about. I knew intuitively medication wasn’t the right purse of action for me to take either. It was as if My body was saying “no, no, no”
I wasn’t permitted to see a neurologist until I took at least 4 different types to their maximum dosage. So I went against my body. And I’m the process my health deteriorated more and more and more. Luckily, I had this level of awareness and once the neurologist confirmed there was no support available to me at all whatsoever and the reason behind the meds not working was because I hadn’t taken them long enough, I really started to tune in and pay attention to what my body was communicating to me all along. I haven’t looked back since. Well, only to give thanks, gratitude and praise to myself for drowning out the noise from all around and going within. My body knew the answers all along.
Oh Em, what a fantastic and brave piece of writing! 💛 I love how you had to restrain the swearing for your mum 😆 I can relate to so much of what you have written here and I want to thank you for being so open and honest about your health struggles... it really helps me feel understood and less alone 🥰
Whilst health professionals are largely fabulous, I feel it is hugely important to speak up for yourself and your body... You are right that you know your body better than anyone... and our instincts are usually right too. We seem to have "learned" to trust professionals without question and not listen to our instincts as much, to sometimes detrimental consequences. I'm not advocating questioning everybody on every little thing, but if you have a strong feeling/instinct about something.. speak up! Or, if you're not quite ready, give yourself more time to think/research and come back.
I can't believe that the dermatologist said there is no link to diet and skin!! 🤣🤣 Was he having a laugh! There is plenty of evidence to suggest otherwise... and one of the first things I get told about my Psoriasis is that what I eat/don't eat can have a huge impact! 🙄 I wish it didn't though, because I MISS CHEEESE!!! 😭😆
I had to endure 3 chest infections, two bouts of pneumonia and 4 courses of antibiotics in one horrific year when I was 34 before they finally agreed to send me for scans... which subsequently revealed a collapsed lung and a tumour the size of a golf ball! "But you're too young for it to be anything like that" they said... Well, clearly not! 😒
After 7 wonderful years cancer free and thriving... Covid hit and my life turned upside down again. It then took almost 4 years of "it must be long Covid" and "you might be perimenopausal" along with an enormous reluctance to investigate further... it turns out my crippling joint pain, fatigue and hair loss were due to an Autoimmune Disease related to my Psoriasis (called Axial SpondyloArthropathy - for anyone who wants to know 😉). Apparently I'm "lucky" that it only took 4 years to diagnose... the average is 11 years!! Why?!
Finally, about all the "ologists"... how about a new one... "MyBodyOlogist" 🤣