I’ve got this friend, Sarah. She’s down in my phone as Sarah Blonde Short Hair because I took her number at an alumnus event and didn’t know how else to identify her. In hindsight, yes, I should have just asked for her surname, but it was one of those where there’s prosecco at like ten in the morning or something hideous and your old lecturers are walking round in jeans and off-white Nikes and it’s all a bit weird and you don’t really think about asking for people’s surnames at times like that.
Sarah has a daughter my age who is similarly poorly. She also has this friend, Jacqui, who I’ve never met, but if I were to meet her, I’d likely save her number under Jacqui Fucked Up Gums.
That’s because, according to Sarah, Jacqui once had fucked up gums.
‘You should have seen them, sweetie, I mean the woman looked like one of those, I don’t know, one of those sabretooth tigers or whatever you get, honestly, I mean her teeth, you know, your teeth are so very long, really, when your gums aren’t there, I mean this woman’s gums had receded, well, into the ether really, poor lady, until there was barely a thread to hold anything in place, and then what she did was she-’
‘Sarah, love,’ I said. ‘We’ve talked about this. If you want me to write a vignette about you, you’re going to have to pause for breath. I need to break up your discourse a little bit so readers can see you, get a sense of what you’re doing, wearing, where we are.’
‘Oh, I know, I know, but you know how I can so excited, I’m just so excited by ideas, I mean, here you go, ok, tell your readers I’m, I’m taking a sip of coffee and my hands are all in the air and my blue eyes are popping out of my head and everyone in the café is looking at us, because Rosie, I mean all these ideas about how the mind can heal the body and how we can think ourselves back to health, they really are true, I mean we really can heal ourselves, and you will, darling, you will, you really will, because this Jacqui, you know, sweetie, I mean she meditated on her gums, and we sat around together, this group of us, all willing her gums to heal, and we channelled that, we channelled that will into healing, and you know what, she went to her dentist the following week, and her dentist couldn’t believe it, because her gums were completely healed, better, finito, sorted.’
Sarah did pause for a sip of coffee and I asked her jokingly if she’d slung some speed in there while the waiter wasn’t looking. She looked at me blankly and said, no, aloe vera.
That’s because Sarah takes health very, very seriously indeed. Yoga she does, drink she does not. She takes probiotics daily and fasts intermittently. Pharmacy is futile, because a common cold is someone getting up your nose; have it out with them. Heal. A sore throat is an inability to say what you really think; so just say it. Heal. Heart disease has psychological roots. Autoimmune diseases are a disruption of your spirit’s ascension to the beyond.
These less orthodox paradigms didn’t start with Sarah, but she’s all over them like a rash. And if she had a rash, she’d know exactly which combination of herbs, mantras and meditations to throw at it. She’d talk to it kindly, tell it to heal. And I promised Sarah that her ideas and encouragements would find their way into this book, because the debate about the power of the mind and its healing potential is so pertinent when it comes to MUS.
I mean, the notion that there’s a Cartesian line separating the mind and body is a bit hackneyed now. It’s widely believed that our mental health affects our physical health and vice versa, and I have no doubt that stress, trauma, grief and self-loathing will surely find their way into our physical form somehow. The iconoclastic writer Matt Haig is better for this stuff, really: his memoir Reasons to Stay Alive is all about learning to live with your demons and not letting them ‘av you and there’s a lot about the crossover between mental and physical illness (that’s not the blurb). I devour his work. I listen to Sarah with aplomb; ears everywhere, and her arguments have traction. Anyone who’s experienced chronic illness, medically explained or otherwise, will have felt that thirst for answers, that desperation, and each person is entitled to any paradigm they so choose when it comes to making sense of their illness. Perhaps the link lies in childhood. Perhaps it’s asbestos related. Perhaps the soul is trying to sod off from the body and it’s been blocked by ectoplasmic barbed wire. If you’re ill, reader, then whatever truth speaks to you, have it. If it helps you move forward, soul and all, have it. But there is a dangerous, lazy and wildly erroneous offshoot to the question surrounding the mind-body connection, and that is this: would it be ethical to not research and medicate all diseases on the premise that the mind can haul the body out of ill health? I am all over Sarah’s arguments, and I believe that our thoughts can affect our health, but pray imagine for a sec the messy trajectory of any another disease being left to thoughts alone. Honestly, choose a disease, just pick one, and imagine a doctor telling you you’ll get better from it if you do the right thoughts. What other set of patients would get cajoled into doing big bike rides and playing team sports in order to cheer themselves well? The thing is, people with names for their diseases might do bike rides, think positively, chant at their gums, go vegan, but they also get medicine. So, reader, I’m going to talk a lot about about how we should live better and slow down and not be afraid to love ourselves, and I’m going to talk about how living a sped-up and stressed out lifestyle might have had some part to play in my body’s demise, but if you yourself are ill, know this: illness is multifactorial. Illness is rarely as neat as cause and effect. Illness is not your fault. Ill people deserve the right to choose between theories and models and treatments, but one of them should be medicine, right? And how do we get medicine if arguments about thoughts alone being enough to sort the body out preclude research?
To get Sarah on board with this, I bought her another coffee, and said something to this effect:
In any country with basic infrastructure, when you get ill, a doctor will give you a diagnosis, so that you have a name for your illness. Then, if is treatable, the doctor will give you some medication, and you will probably get better. If, on the other hand, the doctor gives you a diagnosis, but is only able to offer you medication to help manage – or delay the very worst bits of – your illness, you will get a prognosis, which is a prediction of what the development of that illness is likely to look like. You will probably also come under the tutelage of a care team, and be monitored by that care team for the rest of your life.
Of course, there will be plenty of exceptions to what I have presented as quite a binary simplification of basic healthcare. The systems in the UK and the USA, for example, are far from perfect, and the degree to which both will, on occasion, deviate from the model I have described above leaves a lot to be desired. And besides, who wants a diagnosis when it’s bone cancer, or heart disease, or epilepsy, care team or not? Please don’t think for a second that I would prefer that. But what I am here to convey, and what I can offer you in terms of across-the-board truths, is that care for those with medically unexplained symptoms is rubbish.
Sarah, it is rubbish. Show me an exception, I implore you. It’s like this: if you want funding for research into an illness, there needs to be a biomarker for it. A ‘measurable indicator,’ I suppose like when you zoom into a cell 947, 000 times and there’s a tiny Dick Dastardly off Whacky Racers kevving it up round the nucleus. That sort of thing. If said biomarker exists, money gets pumped into research for treatments, there are trials and that, and your illness’ trajectory is roughly mapped out from there.
If there is no biomarker for your suffering, or if your suffering doesn’t show up on a scan, all doctors have to go on is your story. And the thing is, doctors want to make you better. It isn’t their fault that when you tell them you’re still ill and they’ve done all the digging they can, all they can do is apologise and give you a flyer for a support group 20 miles away. I’m sure they would like to put a care plan together for you, and refer you to a specialist team who will regularly monitor you and scan you for bits and pieces. But there just isn’t any money for that. Your story is not a biomarker. There is no Dick Dastardly to be found. That’s it.
So what happens next is, you have well-meaning friends and friends of friends ringing you up talking about bone broth and kombucha tea and kefir milk. You have people WhatsApping you about the benefits of soy milk, and others telling you to stop drinking soy milk. You try Emotional Freedom Technique and get relatives to tap on your arms and legs. You pay people to poke needles into you and then you pay for supplements or else the needles won’t work. You have people telling you to just get off your tits on gin and stop worrying. You walk in forests to breathe in the trees. You mute everything – notifications, telly, earworms – because you’re told that as a society we’re too overstimulated. You do all this and it isn’t harmful and there are little bits of truth and healing in all of it, but when none of it works, there’s nowhere else to go.
And sometimes you’re ok, so you do stuff. And when you do too much stuff, people start to wonder why you were able to do stuff last Wednesday when they saw you drinking a latte outside Costa, but now you can’t do stuff. You tell them it’s because you have an illness with no diagnosis or prognosis and you’re trying kombucha tea for it. Without a diagnosis, it is hard to convey to people how ill you are. And you find yourself not wanting to go into detail, because then it sounds like you’re moaning, and that’s not very British of you, is it? Even though you are angry, and you know you’re ill, and you know this is not right. So then you write a memoir and you put some your mates in it and you use the second person pronoun where possible so folks don’t think you’re one of those self-indulgent people who goes on and on about their ailments all the time, ha ha ha.
Sarah listened and she said ‘yeah, but…’ a lot and I listened and I said ‘yeah, but…’ a lot and the lovely Italian barista on the periphery of this drawn out Socratic dialogue offered us a free refill and said it sounded like a very interesting conversation, ladies.
And we all agreed that it was very interesting indeed.
These are the random paths that chronic illness have led me down; expect silliness and deep reflection in equal measure. Impaired health can bring pain, despair, uncertainty and a bit of unexpected joy; seek solace here if you crave some light relief from campaigning/suffering.