The colour of my bedroom wall is egg white mixed with grey and there are two small cracks below the left window. I don’t know exactly how long I’d been in bed when I started to notice the minutia of my surroundings. It’s been eight weeks since I’ve been able to leave the house. Five weeks since I learnt to eat again. And three months since I caught the flu that would floor me in a way I had never imagined was possible.
A low immune system combined with weak muscles means I’ve had my fair share of illnesses over the years – and a few other people’s as well. Still, until this winter, I’d never seen my body break. I’d never felt a level of exhaustion so complete that even breathing became too much to handle. By January, the flu had become flu complications and I had become joined to my mattress, barely able to move.
This sort of sickness is a nothingness, really – a state of limbo; neither well enough to be a functioning member of society nor possessing a sign of illness that signals to the world you are sick. There’s no broken arm. Not even a sore throat and hacking cough. “I’ve got the flu” becomes a default line because it’s simple, easy. “I’m really tired”, you come to understand, is meaningless, giving the impression all will be well with a good rest and that if you’ve ever been tired, you know what it is to be exhausted.
Exhaustion is not tiredness. Tiredness – yawning at 2pm in a boring meeting or hungover after a stressful week at work – is the holiday destination you dream of when you’re exhausted. It’s as if your entire body – muscles, eyes, lungs, fingers – has gone on strike and you are a one-woman picket line. The most basic, everyday things can become a mountain – traumatic hurdles that require the mental and physical strength of a small army. Watching The Crown to relax when the light of Netflix hurts your eyes. Eating without having a panic attack because chewing takes energy you need to breathe.
“On a bad day, I literally can’t get out of bed. My biggest success is to get water and do a wee,” Natasha Lipman, 29, tells me about her own experience. Since childhood, Lipman has had a range of complex chronic-health problems that lead to fluctuating pain and exhaustion, as well as Ehlers-Danlos Syndrome (EDS) – a connective-tissue disorder that affects her joints – which have worsened with age. It means even activities as small as having a shower can cause what she calls a “knock-back” – a forced recovery period that can last anything from a few hours to the best part of a year. “My life’s spent making calculations about what is ‘worth’ my energy,” she says. “If I go to work for a few hours on a Tuesday, I have to clean myself on the Monday otherwise I’ll be too tired.”
The most basic, everyday things can become a mountain – a traumatic hurdle that requires the mental and physical strength of a small army
For Rosie Fletcher, her ME means both her body and mind can simultaneously experience “complete exhaustion". “It varies from day to day how it affects me,” she says. “On my worst days, I have to turn the television off because I’m too tired to keep my eyes open to watch it – thank goodness for podcasts – and if someone asks me if I want a cup of tea, I can’t work out the answer.”
No one really talks about this. There are millions of women in the UK living with debilitating physical illnesses or disabilities – whether that’s a short spell of bad health or long-term, chronic conditions. And yet I realise, as I write this, that I’ve not had these conversations. I can count the number of times I’ve spoken in detail about illness – no editing, full detail – with friends or family on thumbs, let alone one hand. Twenty-eight-year-old Fletcher tells me she spends much of her time minimising “how bad I am” to smooth over social interactions – “it’s just easier to glide over it” – and I know I’ve done the same more times than I want to remember.
I’ve watched with awe in recent years as the so-called taboo of mental health has started to be broken– with celebrities using vehicles like Sports Relief to raise awareness and brave people, like The Pool’s Zoë Beaty, talking openly about depression. But still, exhausting physical illness is rarely spoken about in public. Musician and broadcaster Vicky Beeching, who has a chronic-fatigue condition and tweeted a picture of herself in hospital this week, is a rare example of someone in the public eye speaking out. This gap, between more openness around mental health and near-silence over hidden physical illness, is particularly strange, considering anyone who has experienced it knows there is no neat separation between physical and mental health. When your body is too weak to leave the house for months on end, depression is a natural companion. If your health grinds to a halt suddenly, anxiety can come fast and frequent.
Lipman, who works as a journalist for the BBC – largely remotely, from her bed – has to spend nearly all of her time at home and experiences what she calls reactive depression: if she was feeling physically well and suddenly has a crash, she’ll get severely depressed as a response.
In some ways, talking about this can feel particularly difficult – shameful, even – if you’re disabled. Many of us spend a lot of time being “strong” or fighting to be seen as coping, perhaps in part because we live in a society that still largely views disability as weakness, or because we ourselves are relentlessly striving – to hold down a job, to see friends or to appear “well”. I’ve been fortunate enough to have never had mental-health problems previously – rightly or wrongly, I’ve prided myself on “coping” (whatever that means) with whatever happens – but, since my physical health has worsened, I’ve had to become more aware of my mental wellbeing than ever before. The coping methods are new and strange. I find myself following people with chronic illness on social media, as if to see a reflection of myself. I go over previous seemingly innocuous events – that time I walked along the Thames after a party – as I fight the fear I won’t be able to do it again. I type the word “absolutely” to a friend and my iPhone’s predictive text suggests “exhausted”, as if Apple is now mocking the new repetitiveness of my days.
Many of us spend a lot of time being 'strong' or fighting to be seen as coping, perhaps, in part, because we live in a society that still largely views disability as weakness, or because we ourselves are relentlessly striving: to hold down a job, to see friends or to appear 'well'
Speaking out about this may be valuable, but doing so can come with its own stresses. There’s an added burden in being open with a world that often doesn’t view you as really ill. That unique toll of a sickness – shrouded in misconceptions and hidden lives – which can be simultaneously debilitating and seen as “not real”. Some conditions, such as Fletcher’s ME, are notoriously perceived as fake or “all in a woman’s head”, while generally people with chronic illnesses have to deal with suspicion from those around them (follow someone on social media who’s so ill they can’t get out of bed and you’ll inevitably see a stranger tell them to “Get a job, lazy!”).
“It’s all so emotionally exhausting,” Lipman says. “Not only weighing up every single step I take – I’ve been dying for a wee since 7am but am too tired to get up yet and it’s nearly 11 – but having to constantly explain, justify, beg for help to people who dismiss me because of my age and how I look.”
Fletcher tells me this same feeling means she’s wary of telling people about her health. “I worry that they’ll be the person who doesn’t think ME exists or wants to recommend some spurious treatment,” she says. Exhaustion, she adds, is simply not taken seriously. “It’s the classic ‘I get tired, too’ and having to patiently explain that the fatigue of chronic illness is not the tiredness at the end of a long day that you can sleep off.”
This becomes even more of a strain when it’s doctors – the very people you’re relying on for help – who are the ones dismissing your illness.
Katharine Seton, who is researching a PhD on ME and herself has the condition, says there’s a big problem in the medical profession with taking conditions like ME seriously. “In early ME research, psychiatrists pushed the belief that if these patients altered their mindset, they’d simply recover. This is far from the truth.” While progress is being made in health professionals’ understanding of ME, she says, some patients are still waiting years for a diagnosis with terrible consequences. “[It leads to them] often having difficulty getting benefits and end up living in poverty and moving back in with their parents.”
I am proud of the women speaking out when even talking is exhausting. To be believed. Understood. Amid it all, that is far from small
Fletcher counts herself as lucky that she’s always felt believed by doctors – “It’s terrible that I count myself as lucky,” she adds – but that, due to a lack of research into her illness, the treatment simply isn’t there to be offered to her (in the US, ME receives one-sixth of the funding that male pattern baldness does). “Most of my treatment has been what I've put together [myself] from my experiences with an occupational therapist, a physio, a psychologist and the internet,” she says.
It took Lipman decades to get the multiple diagnoses she needed, which led to her struggling at school; when she was 12, she was forced to walk on a dislocated knee for a day – “My teachers and school nurse just thought I was lazy,” she says – and sat her GCSEs with three slipped discs in her back.
Throughout her twenties, even with a diagnosis, Lipman says that her symptoms combined with her age and gender meant “doctors massively patronised me". Last year, her GP changed her morphine patches without speaking to her, making her pain shoot “through the roof”: “At 28, I had to take my mother in with me to the doctor so they would listen to me.”
In the whitish grey of my bedroom, things are (slowly, slowly) getting better. I have learnt, begrudgingly, that the smallest achievements can matter – managing to drink enough to avoid dehydration or putting deodorant on once a day with the glamour of a Hollywood starlet. I’m making a point of telling close friends what’s happening. I have faith again that I will get outside into the world of trees and people and I’m slightly terrified about it, too. Self-care has become a new priority – the revelation that it’s perfectly permissible to listen to your body and do what it needs. And I’m suddenly even more grateful that I have a family for support and a job I can at least partly do from home.
Above all, I am proud of the women speaking out when even talking is exhausting. To be believed. Understood. Amid it all, that is far from small.