Onerous Citizenship: can you be too sick for treatment?

“Illness is the night side of life, a more onerous citizenship.”

– Susan Sontag

1.

The idea of being too sick for treatment is a slippery one when you live in a nation state with socialised healthcare. Where medical assistance is free at the point of use, where it begins antenatally and embraces hospice and palliative care… I wouldn’t blame you for wondering what on earth I’m getting at: what sort of melodrama is this? The NHS, surely, is for everyone, and even in straitened times, we – O lucky inhabitants of a welfare state – operate according to an ingrained assumption that some degree of rational triage takes place, that if you are very unwell, very disabled, of course they (the great, nameless They who deliver that “care” we all silently rely upon, count on: wait for, if we don’t need it right now) will provide, will remember, will in the end see to it.

This isn’t true at all. Yet discussing it is a rhetorical minefield given the explosion of illness-as-career-mongers over the past five years. Claims of neglect and maltreatment from people who have established personal fundraising campaigns for dubious (or even scientifically impossible) diagnoses cast a shadow over the validity of challenging pervasive systemic problems which make the NHS ineffective at delivering care to exceptionally vulnerable patients with multi-systemic and comorbid conditions.

For this reason, we need to take money out of the picture if we want to have a meaningful conversation about medical care, care failings, and especially the three-way intersection between under-provision, poor clinician education, and medical trauma. I’m therefore calling on chronic illness bloggers, vloggers, tweeters and instagrammers to stop focusing on monetisation of their medical lives through Patreon, GoFundMe, and similar platforms. We need to be heard and we will not be if our primary object is competition for views, likes, and money.

This is not to say that people with disabilities shouldn’t be paid: if you want to sell your skills, charge the market rate! I positively encourage you to do so. But don’t sell your pain. Don’t sell your nights up vomiting or your feeding tube surgery or your blood draw. Talk about what matters: are you receiving care? Are you respected? Are you poor? What do you need? What should be done better? Who has let you down? Who hasn’t?

I am someone locked out of treatment by low functional ability. That’s the jargon for “too sick”, yes. Oh god, it really fucking breaks my heart. Almost more than the time to diagnosis: this is the thing I can’t stand, the thing that burns in my throat like invisible tears. I have a lot of diagnoses, I won’t bother listing all of them, but the most important are Ehlers-Danlos Syndrome (EDS) and Postural Orthostatic Tachycardia Syndrome (POTS). Neither is strictly curable but you can do a hell of a lot to improve both: this should be the good news. When I was first diagnosed, I thought it was. And more fool me, because it hasn’t turned out that way at all.

2.

In my region, there is a cardiologist who treats POTS patients; a rheumatologist; a pain specialist; and a physiotherapist who has some experience with EDS. Of these doctors, the cardiologist is wonderful: he gives me home care over the phone and tweaks my meds to try to get the best combination, and he readily researches further options since my condition is refractory (I’m still symptomatic despite being very medicated, though the medications have helped). I respect and like him more because he acknowledges we are pretty much at the limits of local care, and it doesn’t hurt that he treats me like a human being, too.

That was the good one. The rheumatologist said (in our single face to face meeting) that he did not treat such severely affected EDS patients. Okay, a recusal. What does that leave me? The pain specialist took over from my previous pain consultant and her first action was to discharge me from her service. EDS is a genetic illness, there’s currently no cure, so I will be living with chronic pain for the rest of my life: I actually don’t care, I’m pretty tough. But I do need some pain management input; I’m not a doctor! We called, checked out what had happened… she would only take me back following a complaint to PALS. A lesson in how not to make a patient trust you. At this point I think I may be on the books of her service technically, but we’ve never met or spoken.

Okay, no pain management, then. How about that specialist physio? PT is the good standard in effectively managing EDS, so that’s an important one! Oh dear, the specialist physiotherapist is attached to the rheumatology service run by the consultant rheumatologist – he only sees EDS patients who can come into the hospital. You can only get hydrotherapy if you come into the hospital. You’re basically fucked if you can’t come into the hospital.

Is this a disability rights issue? Sure it is: no way is my trust conforming to the Equality Act. But you know who isn’t fantastic at taking on major legal and administrative battles? People who need about 80% of their energy for hydration, eating and some basic hygiene, most days. There’s a local EDS group, part of EDS UK! Could we get together and push for better care? Oh, except I can’t go. My parents and my partner have been to some meetings. I haven’t attended even one.

Don’t start fighting a battle like this, because you will not win. I have tried emailing PALS, desperate, heartfelt. Explaining what it’s like. Got a form letter back, nothing changed.

3.

What else? Where else? That can’t be it. How about specialist centres? If you know what Ehlers-Danlos Syndrome is, you may have heard of Stanmore. This is the only specialist inpatient centre for EDS. My local community physiotherapists (not EDS specialists), rang up Stanmore to talk about sending me there: they were told that Stanmore would love to help, and could possibly admit me for assessment, but that I was too ill for the programme.

I would like to know how I am supposed to arrive at the point of doing the programme. Am I written off? I’m not very old yet. It doesn’t seem like much of an answer.

Of course Stanmore isn’t the only place with some doctors who know about my kind of problems. In London there’s UCLH, where several of the more prominent EDS doctors hold their outpatient clinic. And there’s NHNN – part of the very same trust! – where the autonomic unit is located, and since my dysautonomia seems to reach beyond POTS alone, this may well be the best place for further testing.

Only these are outpatient services, so you have to be well enough to get there and attend hospital as an outpatient. I can barely make it to my local hospital. I go maybe once every six to eight months for unavoidable testing, stuff that can’t be done anywhere else (even my bloods are drawn at home by a community phlebotomist), and it takes weeks to recuperate. Everything takes weeks to recuperate.

It’s not that I’ve given up for good. It’s not that I’m writing this merely to whine. You know, I am still hoping that somehow it will work out, the admission to UCLH or NHNN that my GP and cardiologist agree is the best option now. Discharge to Stanmore. Symptom management, which means “a better life”.

How likely is it, though? It feels like I’ll never get there. This level of illness is: unspeakable isolation, a blizzard of experience cancelling and cancelling and cancelling. Usually there is no hope, no future, no other thing than now, me. No time. No expectation of anyone to help me. When I ask for referrals, or explain what is wrong, it feels like the greatest waste of breath in all my life.

I think, to tell the truth, there comes a point when the NHS gives up on you. I don’t know when I should begin to accept that.

Sloth, perdition, joy? On being bedbound.

I’m an expert, so you have to trust me. Most sensible people realise that, of course, it’s rubbish being in bed all day and every day. It’s a commonplace of chronic illness discourse to lament insensitive comments along the lines of, “Must be nice, lying around instead of going out to work!” These come far less often than you’d think from a glance at the memes that have spread, urticaria-like, across Tumblr and Instagram in the past few years.

Actually of course, it’s crap. Why, though? We’re currently in November. Let’s be honest: I don’t have to get up and go out to work tomorrow. I will be staying in bed, all day. People will bring me vegan food and iced coffee and lemonade: sounds okay, doesn’t it? Telling that side of the story does seem to lend credence to oh-you-lucky-disabled-buggers. What is so bad about it?

First there are the things that hang over you. The worries. Bed sores and blood clots. Every time a nurse from my GP surgery comes out to see me, these are their two biggest concerns. I’m not the worst off here, because I can usually (not always) turn myself in bed: all the same, I’m not moving enough. I’m more afraid of a blood clot than of bed sores, because if I get one I’ll be moved into hospital.

Second, there are all the things that work less well if you’re lying down. The human body isn’t designed to be recumbent—or at most slightly propped—all day. It messes with your organs, your circulatory system: everything. Whatever has made you bedbound in the first place is unlikely to be helped by your heart getting weaker, your blood moving around the body less efficiently and perfusing poorly, your muscles wasting, your intestines working less well … I could go on, but I’ll spare you.

Have you ever tried to eat lying flat? There’s an art to it. It’s not all that hard to become deft at handling light cutlery (so you’re not dropping food on yourself all the time), but good luck swallowing and keeping it all down. Gravity isn’t helping you like it usually would. Swallowing pills lying down can be considered either an ordeal or (if you’re a real optimist) a special talent.

You might think the biggest problem would be boredom. For me that is not the case at all: I just think! All the time. If I was any better than I am, I would get the fuck out of bed; the only reason I’m here so much is because I have no energy and my body is malfunctioning a lot. As such, when I do scrape a bit of energy up, I have no problem at all finding things to channel it into. Poetry, editing my poems, Duolingo (I do French for continual grammar practice, German and Italian for my “main” languages, and Dutch and Russian for fun), meditation in many different styles, emailing friends when I can. I’m hyper-conscious of not being able to contribute to my household much, so I do research and organisational tasks like gift-shopping, interior decoration plans, clothes shopping for the rest of the family, planning all our menus, and following up on any complaints. I use social media a little, partly for friendship, connections and self-expression—but increasingly for activism, as it infuriates me to see the big diversity push in British poetry mostly leaving disabled poets behind. I read poetry pamphlets, and bigger books using my phone—often this is the only device I can hold. I handle some of the listings and messages on my Depop, where I’m selling off clothes and jewellery to pay for extra minor (non-NHS) medical expenses. I listen to hours of podcasts, audiobooks. I read the internet, I go down rabbit holes, I learn, I plan.

…none of that is much. It doesn’t begin to be comparable to having a job, and I deliberately wrote that list to explain how easy it is for me not to get bored, rather than to illustrate exactly how labour is divided. I have a lot of help. I need a lot of help. I often can’t brush my hair or wash my face. And you know, yes, that is embarrassing to admit to, but I promised myself that if I started writing for this blog again, I would face facts like these: the ugly and the gross. There’s nothing new about saying “chronic illness isn’t glamorous”—but who ever thought it was? Often the very same people saying it isn’t glamorous are portraying an unreal image of the day-to-day in which they still are glamorous, attractive, poised, cute, or however they’re shaping their brand.

There shouldn’t be any brands. These are our bodies. We don’t know how long we have them or what they’re going to do to us, for us, or with us. My self, the assemblage of matter I call my “me”, is a mystery to me as much as to anyone. And it’s hard to live with that, to fill time without knowing how much time: a long life, a lot of pain, or a freak rupture, a sudden end? This isn’t some “me” thing. I’m in bed with the time to put this into words, but this whole paragraph is true of you: every single reader.

What did you do today? Were you bored? Why, or why not? I wasn’t bored, and I wasn’t happy either. Life between the bedclothes is always, for me … an in-the-middle kind of thing.

Illness Visible: On loneliness during invisible illness week

At times I want to say, I’m lost. Not say the words aloud, though, since I am usually alone in my bedroom: the same bed as always. The same pillows. I talk to myself incessantly and inwardly, doing the police in different voices: I am angry, selfish, tender, wondering. Many girls in one girl. 

For years I laughed at the notion of an inner child, what an old-fashioned thing, what a Viennese fancy. As if no part of me could be soft, although I accepted – reluctant but honest – my own ugliness of spirit and body; accepted, because it was always there, my own bittersweet phrasemaking, my fancies, my self-denying. Yet it was risible to me, the thought of a child; even the recollection of myself in childhood was an unstable thing, pictures of her made me feel sick. 

And now that I have her back again, the shimmering and patchy “I” of the past? Many girls in one girl. At the same time, fragments in a mist, like some person only just irretrievably shattered. 

Touch me wrong and I’ll fly apart. I am a thin-skinned, blue-tinged egg of a woman: don’t hold me tight. I am untidy in sorrow. Here alone – yes, really: here, a place – I have such tales to tell, more than a thousand; yet I am pent in my shell and seething, then stilled. My soul takes shape, frosts, glitters in the light of my eyes. I am lonelier than anything, shouting at you, shouting into my empty chest cavity, shouting into the corners of the room where I lie, always. There is nobody like me and this is impossible to tell.