In defence of bad patients

Let us eat cake

I was talking to an online acquaintance about our shared experience of ME/CFS when she made an offhand remark about how “we do all the right things, don’t we,” and I thought, Oh.

Oops.

She meant, of course, that we do all the right things to look after our health — have early nights and meditate and eat nutrition-rich food and do a bit of stretching (got to appease the ever-present “HAVE YOU TRIED YOGA?” crowd) and generally make ourselves such good ambassadors for our frequently misunderstood condition that no one could ever accuse us of malingering.

The truth is, though, I don’t. I am not an optimal patient.

Sometimes this makes me feel guilty, especially lately, when I see newly-diagnosed sickos posting about the interventions they’re trying, the doctors they’re paying to see and the supplements they think will work, or that sometimes actually do.

I’m not saying their illness experiences will be the same as mine, especially if they got their diagnoses quicker than I did.

When I developed ME/CFS in the late ‘90s, it hadn’t been recognised by the British government as a chronic illness — that happened in 2002, and it took me another couple of years to get a diagnosis.

Even then, I had to see a private GP who spent an hour taking my medical history before confirming that I fitted the criteria, in contrast to a series of (yes, presumably overworked) NHS doctors who said things like, “Maybe you should take up jogging,” and “You don’t want that, so I’m not going to diagnose you with it”.

Once I had a diagnosis, I found out that the things I’d been trying and encouraged to do — mostly some variation of pushing myself and collapsing later — had probably made me irreversibly worse.

Still, I embarked on a programme of get-well activities, using up all of my and a chunk of my parents’ savings in the process.

I bought a book called From Fatigued to Fantastic!, utterly certain that I was about to follow that trajectory. I bought many other books too, about hormones and adrenal systems and meditation and blah blah blah.

I also bought supplements, paid to see a nutritionist, herbalist, naturopath, acupuncturist and osteopath.

I flew to Florida for some kind of mind-body modality that I was convinced was going to cure me, a weekend where someone unironically said the words, “When you read ‘impossible,’ just think, ‘I’m possible,’” as if that even makes sense.

I spent a lot of time thinking about getting better and trying to mould my life back into the shape it had been before. I thought I had to.

If you do all the right things, the logic goes, then it’s not your fault if you’re ill.

This way of thinking is endemic in medicine and alternative health spaces alike and we project it onto ourselves and each other, use it to defend ourselves from criticism.

When you have an illness that others can’t see or understand, where research is so horrifically underfunded that we have no viable treatments and patients in their twenties are dying thanks to assisted suicide and a tragic lack of specialist guidance, it makes sense that people would want to prove themselves, argue that it’s not in their head, that they are trying, really, that they’re a good patient, compliant and diligent.

I don’t want to.

I’ve done enough.

I’ve had enough.

I was thinking about all of this again because I’ve just read Sonya Huber’s provocative essay collection, Pain Woman Takes Your Keys, which confronts the reality of living with an incurable rheumatoid condition.

At one point, Huber appears to deter well-meaning suggestions from friends, acquaintances or strangers, writing: “I’ve tried everything, and I manage stuff like a pro… I work it like a job, and I have to say I am as responsible as one can possibly be in caring for this very needy pet.”

She then lists her ongoing therapeutic interventions in the book’s endnotes.

Perhaps I’m wrong to detect a little defensiveness, projecting to think this is a justification rather than an explanation. But it struck me as aimed at readers who might be thinking, as many able-bodied people seem to when faced with any illness narrative, But what about… Couldn’t you just… HAVE YOU TRIED YOGA?

(Trust me, all of us who are capable of trying yoga have tried yoga. It’s in the chronically ill starter pack.)

I don’t think sick people should have to do this, to prove that we’re trying as hard as we can.

Because the implication is that if we ever slack off, get tired of constant vigilance and have a late night or a slice of cake, then any consequences are our fault, rather than caused by a series of bodily functions we’re never fully able to predict or dominate.

And while it seems as though Huber is able to find some balance of health, some of the time, I’ve been considerably less successful.

All the books and treatments and courses I poured time and money and energy and hope into? Didn’t help one bit. I might as well have gone clubbing and binged red velvet, or at least spent my twenties and most of my thirties pursuing a specialist subject that was more interesting than Will this make me better, will this, will this?

I’m still infuriated by the practitioner who told me to cut back my activities into 10-15 minute increments, followed by an hour’s rest, aiming to never feel a single symptom, advice that led me to miss many lunches with my grandma in the last year of her life, convinced it would be worth the sacrifice when I emerged from my cocoon fully cured.

At some point, I snapped.

I stopped the daily naps where I thrashed around, bored and unsleeping, went back to pacing my activities as I had before and living within my (drastically reduced) energy means, occasionally splurging on a bigger event that took me days or weeks to recover from.

I stopped spending money on things that may or may not (but probably wouldn’t) help. I lost my youth and enthusiasm.

I was kicked off benefits on the grounds that I was “fit for work” despite the fact that I evidently wasn’t. (The assessor also asked why, if I was so ill and miserable, I hadn’t attempted suicide. Huh. Thanks.)

Yes, I may have gone too far the other way, refusing to see doctors for years because I was sick of being gaslighted.

Yes, that meant I didn’t know my blood pressure had risen dangerously high, leading to me being hospitalised due to a hypertensive crisis at the age of 39.

Now I have to see a healthcare professional once a year or they won’t give me tablets but I can’t talk to them about chronic illness because they just don’t get it. (The last time I explained my history of overwhelming fatigue, lack of stamina and ongoing pain to a nurse, he wrote down “feels a bit tired”.)

I’m over trying, fighting, and proving my worth to medical staff, other patients, or anyone else.

It’s painful and time-consuming to fail over and over, to learn that you can’t spend your way to health and happiness and can’t work your way there and can’t positive-think your way there, either (some things are just plain impossible, it turns out).

In the current political climate, where the government seems hell bent on convincing disabled people that they’re not disabled at all, on bullying and cajoling us into full-time employment even if it kills us, it might be a revolutionary act to accept that how you feel could be how you always feel and to assert that you’re still deserving of kindness and respect, even if you don’t try to change, even if you never did.

Sometimes I see newly-diagnosed people posting about their ME/CFS or Long Covid and what they’re doing to combat it, and feel guilty I’m not devoting the same time and energy to my situation, although I have grief and a PhD to deal with, and it’s been 25 years since I got ill.

Even if I were to suddenly improve, in many ways, it wouldn’t matter. I’ve already lost the life I wanted and thought I was owed. Magically attaining perfect health now couldn’t redeem the last two-and-a-half decades.

There’s nothing wrong with trying but there’s also nothing wrong (apart from all the things that are wrong) with those of us who have given up.