Don’t forget about the ME/CFS, Long Covid carers. We need help.
Acceptance is a big part of the role for new carers. But no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening.
It’s a long time ago now but I can vividly remember being first introduced as a carer. “Rob’s caring for his wife who has ME/CFS,” a friend said. It felt so acutely weird to me that I immediately corrected them. I butted in: “I’m not really a carer in the true sense of the word,” I replied. “My wife’s not well. I look after the kids. But we’re doing alright.” In true British fashion, I didn’t want to raise an alarm. God forbid.
More and more carers are doing the job informally after their lives were upended during the pandemic. I’m a writer, not a carer. Carers have professional qualifications, look after the elderly and sick, or, support outpatients in the community with serious and/or terminal illness.
I thought this was a temporary gig. Now I’m a permanent, if unofficial, member of this hidden care workforce in the Netherlands which unfortunately includes children.
I occasionally write about my wife’s condition (see here and here), mainly to explain it to people and highlight the twisted way modern systems undermine these patients. For many decades, ME/CFS patients have struggled for recognition from healthcare, governments and society more broadly. A similar experience is now befalling Long Covid patients. Research shows that nearly half of people with Long COVID have ME/CFS and the blindspot into which patients fall is baffling. It feels like we’re paying for medicine’s addiction to siloes, where a cardiologist sits in one room, while a respiratory specialist sits in another and never the twain shall meet. Our bodies, and all of their various components, are connected as part of one system. But medicine isn’t.
And as a result, it is left to patients and their carers to explain the complicated story of how ME/CFS, a neurological multi-system disease, never made it onto healthcare’s radar.
This happens to be a very delicate job, too, which requires understanding of the condition’s nuances. I answer questions every day about ME/CFS diagnosis (done by exclusion), treatments (officially, there are none but patients try a mixture of different things) and its defining characteristic, Post Exertional Malaise (PEM), a ‘crash’ or ‘relapse’ which means her symptoms get worse with mental or physical exercise. I also walk the tightrope between body and mind, aware that ME/CFS suffers from being over-psychologised by medicine. It’s all in your head, my dear. This undoubtedly has thwarted research efforts.
Obviously, I’m not alone in my sick-splaining. I was advised to join a ME care support group recently. The first post I read so closely mirrored my experience that I sent a direct message back to the person to thank him. Most posts were from partners-turned-carers like me, who were tired, afraid and confused, exasperated at having to communicate this condition to family and friends.
We talk about loss of control, mourning a (healthy) past, fear for the future, job insecurity, personal isolation, anger and rage, exhaustion and despair. Anger is palpable. But alongside it is a feeling of community and support.
I tell my wife I feel like Phil Connors in Groundhog Day. The selfish weatherman in the classic 1993 film (it turned 30 in February) goes to the town of Punxsutawney on a news assignment and wakes up on the same day, every day to the sound of Sonny & Cher’s I Got You Babe. We hope that something changes, but it doesn’t. Each day is the same until — in the film, at least — Phil cracks the code, the loop is broken and he awakens reformed, changed and in love. For ME/CFS and Long Covid, and many other conditions, there is no such happy ending.
Most days I get asked ‘Is she getting better?’ — didn’t we do this yesterday? — and I struggle to find different ways to say ‘no’. I have a short, polite answer because people are so busy, and then something more detailed, which includes stats (four times as many women than men have ME/CFS, for example) and maybe an anecdote, too (“she stepped out on the balcony yesterday” “she is speaking a bit longer this week” and “she left the house only four times last year”). I vary my answers depending on who I’m talking to. And we all wait for something to change.
Why has nothing changed? That’s a tough one. Progress is interminably slow on all fronts. We practice the mantra — more funding, more research, more knowledge — knowing very well that the returns are miniscule, for good reason. Medicine, as a whole, is still hopelessly divided on how to treat these patients. For example, not everyone agrees that ME/CFS and Long Covid are physical conditions; some see them purely as psychological. In practice, that can be the difference between one GP recommending a chest scan while another recommends anti-depressants. This problem has led to huge disagreements among patients and between medical and specialist chronic disease experts. With no talking between specialties, health services are misaligned and chaotic, leaving patients feeling totally abandoned. So they go it alone.
There are now 36 million people with Long Covid in Europe, according to the WHO. With millions absent from the workforce, governments are now talking about the chronically ill as ‘economically inactive’ people, as if their only value to society is when they work. That doesn’t help. A lot of patients are living with the disease, scared, and continuing to work to avoid the associated stigma of being called a ‘Long Covid patient’. Benefits and social support is a separate problem. Here in the Netherlands, we go into the high court next month to try and prove ME/CFS is disabling enough for long-term benefits support, even though my wife is completely bedbound and hasn’t worked for six years. Not all patients get this far; they are disbelieved, gaslighted or ignored. And then give up.
For carers, once again, we’re left to explain these systemic failures to friends and family, who all have views of their own. And we watch the clock knowing that at 6am Sonny and Cher will come back on the radio and the loop will begin again.
Someone in the support group asks ‘How do you balance your needs with your pwME’s needs?’ pwME is a popular acronym for a person with ME that is used in social media campaigns to raise awareness. I have my own thoughts. You need to accept the situation and the guilt that comes with continuing your healthy life. It’s important to stay well and keep in contact with people. Many of my friends in Amsterdam haven’t yet met my wife, and I have lived here for 8 years. That, in itself, is quite sad.
If you look hard enough the positives are everywhere. Me and my kids are closer because of the regular hotel trips and holidays we do alone to give her space to recover. They know the seasonal ebbs and flows of chronic illness, that makes spring eminently more bearable than late November. They miss their mum outside the school gates, but they understand the importance of health. They are only 13 and 11 years old.
Educating people about the complexity of these conditions is a huge responsibility. But who else will do it, if not us? Why should we explain this systemic mess to everyone? And why do we have to depend solely on the grace of neighbours and friends for help?
I do accept that this is my role now— I’m a writer and I’m a carer—but no one told me I’d be trapped in a time loop explaining this disease to a society which isn’t listening. This informal care network which has sprung up in the last few years is multiplying every day and it needs resourcing and support.
Time is precious, action is needed, but I won’t hold my breath right now because it’s 5:59am and I’m running out of…
