Thin Privilege

One thing that really annoys me at the moment is that the HAES movement has managed to effectively elide the difference between “slim” and “skinny”. It’s generally best espoused by the phrase; “Thin shaming is nasty comments, fat shaming is structural oppression”.

 

And it’s bullshit. It’s gaslighting of the absolute worst order.

 

I am a thin person. I don’t like posting photos of myself, but if you dig through this blog long enough, you’ll see photos of me. I’ve been thin for my whole life, a product of being an extremely premature birth, being malnourished to some degree for much of my childhood due to poverty, and due to Ehlers-Danlos which, amongst other things, makes my digestive tract inefficient and kills my appetite and makes food about as likely to come up as it is to pass through.

 

It started in early childhood, where I didn’t put on weight like other children, so there was a constant stream of social workers to the house and the constant assumptions and whispers that I was being abused. By about 6, other children had picked up on it, and I was “skinnyface” – Either getting food smeared on all of my belongings, or having my pack-up stolen and thrown over the school fence because I “didn’t need to eat, [I am] a skeleton”.

 

It continued at secondary school – New city, new people; Single-sex and selective. The pupils immediately picked out that I and two others were unusually thin, so the rumours spread immediately that we all had eating disorders, and we were shunned to varying degrees for that. Again, eating at school was fraught; Having a bar of chocolate would always be accompanied by sicking-sounds from everyone around me (Because of the assumption that I was bulimic), and eating in the dining hall was a nightmare since other students would pour vinegar on my food to “Help my diet!”

 

It only took a couple of months for the staff to join in as well – At PHSE, I was the one in my class who was always held up as an example of “Someone who could use feeding up” or “Someone who OBVIOUSLY put wanting to diet ahead of how they looked” or “Someone who probably has an eating disorder”. The geography teacher found it hilarious that other students had scribbled my name under a picture of an emaciated child in a famine. The history teacher, a few years later, tried to stifle her laughter when the same thing happened with a concentration camp photograph. It didn’t take much to convince the teachers that I was a cruel bully who paraded my thinness in front of the other students to mock them, so they pretty much without exception joined in in pointing out how ugly, freakish and skeletal I looked. Did I mention how confusing it is to always be singled out in lessons about drug use and eating disorders, with the assumption that you’re a heavy drug user, and that you have an eating disorder, when you’re neither? Academically, despite getting good marks and being generally very interested in learning (I still am interested in learning, and improving my skills at various things) I was assume to be stupid and un-teachable and to have no interests other than being thin.

 

Thankfully, sports was a small reprieve – Within my own team, outside of school, I was known to be a fast swimmer and a hard worker, but every new coach had to be persuaded that I wasn’t just there by accident and wasn’t doping. And, honestly, in the changing rooms there were still rude comments and snide remarks, but at least nobody spat in my food.

 

Obviously, in all of this time I’d never had clothes that fit, and going to school in jumpers that hung off me like sacks and tights that wrinkled around my calves made me unfashionable as well. It didn’t matter, my uniform got holes cut in it pretty much every other month by mysterious perpetrators “who were never caught”. One of the ringleaders in my class said that I should be flattered because everyone wanted to see my lovely thin whore body, and everyone laughed.

 

At around 11 or 12, the physical pain started – All of my joints going to pieces. I went to the school nurse first. Her verdict was simple; I needed to stop obsessing over my appearance and eat more. I was stupid, vain, shallow and the literal worst kind of person. I braved going to the GP. He told me that eating a bit more, since “Boys like curves” would help. I still didn’t have an eating disorder, I was still trying my best to put on weight at every turn, to stop the constant taunting and assumptions that I was a bad person. Despite continuing to try to see doctors regularly for both my phsyical health and mental health, it took until I was 26 to be diagnosed with any physical pain-causing problem, and given any pain relief at all, by which point I had basically lost the ability to walk. Because everyone had decided that my only problem was being too thin, go and eat a sandwich.

 

At 16, I started looking for work, and was immediately turned down. Employer after employer told me that, well, a skinny fragile thing like me could never do stand-up work. Bar work? Cashiering? Shelf stacking? All needed someone who looked less “snappable”. This is despite the fact that at the time I was a fairly high-level athlete and hillwalker. No amount of my protestations that really, lifting a tin of beans was not beyond me, would get through to people. At 22, finally, I got a job that I loved, building drystone walls, and was very happy with it. After that, I had a few years of demanding physical work in a teaching lab. All stuff that, when I’d been seen in-person first, it’d been assumed that I couldn’t do. Both of these were jobs I’d got via telephone interviews. I’d always been turned down for non-physical jobs as well, because I “Wasn’t the image that our company wanted to project” – Too unhealthy, probably a drug user, a depressing reminder of poverty.

 

Have I mentioned the street attacks yet? There was a reason that I didn’t go to nightclubs or bars, or really socialise much, and still don’t. Firstly, tht it’s impossible to socialise when every time you go into the toilet, you get someone trying to look over the door because “The famine victim went in there, what do they look like with their knickers down?” or someone tries to rip your hair out to “make you look more holocaust since you’re already halfway there” (By the way, my hair is as thin as it is largely because of scarring in the follicles from multiple people per year thinking that they were the first to make that joke). The thing that stopped me was someone slashing me with a knife, to “See my ribs”. It needed stitches. The police officer that I’d reported it to said “Well, you ARE very thin… They were just curious” Buying food in restuarants or cafes was basically impossible – If I ordered something “too fatty” it’d get spat in or turn up with hair in it, or a cruel note. If I ordered something “too healthy” (which was often the verdict thanks to my cow’s milk allergy) I’d find it spiked with butter or milk that’d make me ill for days.

 

And as for clothing – Yeah, I’ve never been able to just buy clothing that fits. As I sit here, I’m wearing a pair of oversize army surplus cotton trousers which tie with a drawstring, and a silk shirt made for me by my best friend. I’ve never seen someone like me on an advertising board, or a catwalk, or in a TV show (Other than, once in a while, as a heroin addict or a criminal). Clothes are not cut to fit someone with a huge square ribcage and hollow shoulders and a recessed breastbone, and pressure sores on their scapulas and hips and arse and knees from sitting  down with too little padding.

 

In case it’s not obvious – This was not just treatment inflicted by one person. This was not just treatment inflicted by one toxic subculture in one city, or one institiution, or one profession. This is everywhere that I’ve lived, in three countries, five schools, a dozen places of work, everywhere that I’ve ever tried to socialise. I eventually gave up on even the naturist swim – A place where people are famously accepting – because I got too many comments on my grotesque body, and too many people assumed that it meant there was something grotesque about my personality as well. This was, well, structural, systemic; in education, in society, in healthcare, in the workplace and in the media.

 

So the constant gaslighting that “The worst that happens with skinny shaming is being told to eat a sandwich” can frankly go to hell.

Other People

This was an article on Pulse Today today, and it annoyed me so much that I thought I’d rewrite it, showing instead a model of how the same theoretical appointemnt would go as an “ideal interaction” as a patient.

 

I’ve reproduced the full text of the original at the bottom, in case it gets mysteriously deleted.

 

My version goes here, keeping the same title for continuity’s sake;

Treating a Chronic Sense Of Self-Entitlement

She’s new to the surgery, so I’ve booked her a long appointment, knowing that a change of practice means that I’ll get a whole flood of complaints and ongoing issues that need chasing up from her last doctor. I know that I should have read at least the brief precis of her notes before she got here, but they’ve not been uploaded yet, so I’m going to have to wing it.

She launches straight in as soon as she arrives, knowing that a fifteen-minute appointment isn’t much time in which to cover everything;

‘I need a prescription for all my usual meds plus some extra sleepers. And supplies of milk for the baby. My sickie’s overdue and I need a letter from you to help my appeal. How can I work with these knees? I need them X-rayed. And you need to do something about my weight. And while you’re doing the prescription, you can put on some nicotine patches,’ she pauses for breath, ‘And you can do me a rehousing letter. I need a ground-floor flat coz for some reason they’ve put me on the second floor and the lift never works.’

I lean back a bit in my chair, slightly taken aback by the machine-gun fire patter (She’s evidently been running the list over in her head for a while) and start sorting things out in my head.

“Hang on a minute” I say “That’s a lot to take in at once – If we can’t cover everything in this session, can you book a second one for…” I click through my calendar, finding a few slots in the next fortnight “…Either Monday at 9am, or Thursday at 3.45?”

She nods at one of these, which I quickly grey-book.

“Right, sorry. Admin. Which is the most important to you then, that needs to be done today?”

She takes a deep breath.

“Sick note first, my manager has been harping on for a week to get it up to date, and if I don’t get it today, I’m out of work.”

I nod, and queue up the form to type a sick note.

“What exactly is the problem then?” I ask “Is that your knees?”

Assent, again. I ask how long they’ve been bothering her, and to describe the problem a bit. She does so, saying that they affect her ability to work, and I surmise that this is why she wants a flat on the ground floor. I book her in for the community physio, warning her that the first thing they’ll do is to tell her to lose weight and eat better, which will help her weight as well as taking the stress off her knees, and book her in for the aforementioned imaging as well – An x-ray at the walk-in within the week, and a waiting list for an MRI.

I give her an exercise prescription card and, remembering that she said she had a baby, tell her which of the council leisure centres nearby has a creche.

And then I print out the sicknote, saying in half a dozen words that her knees are in pain and are being investigated by her GP.

 

I do a mental checklist. That covers “ My sickie’s overdue“, “I need them X-rayed” and “do something about my weight“. What’s left…

 

“You asked about a repeat prescription – Have you got an old slip on you?”

She has, so we look through it together, and she tells me how each of the medications help her, and what their side effects are. Together, we work out two medications that could be streamlined into one, one which she stopped taking months ago but forgot to stop refilling, and one where she’s happy to try a different medication in the same family since it has a slightly gentler set of side effects.

“You mentioned needing extra sleepers” I say, reading the exact medication off the list “Do you ned more of the same, or a different one?”

She shrugs, and I realise that I should have known that she wouldn’t know, because she’s not a doctor and might not even know how they work. I ask a few questions – Have they stopped working? Do you need more to get the same effect? Have your sleep problems got worse? Did they just not work very well in the first place? And quickly work out what she actually needs, and amend her prescription accordingly, making sure that she can pick up the whole new prescription on the way home (Nobody likes having their medications out-of-synch).

I look up at the clock – Ten minutes left, we’re actually doing well for time, and this is what long appointments are for.

“Nicotine patches, you say? Are you quitting smoking?” She nods proudly, and I smile, more than happy to help.

I dive back into the questions – Have you tried to quit before? How much do you smoke per day? And offer her the “smoking cessation” booklet that I know has all the information in that I don’t have time to share, along with advice to ask her pharmacist for more advice if she needs it, a prescription for her first course of patches, an invitation to come back in a month to see how she’s doing, and a hearty wish of good luck and goodwill.

I ask her again what’s left on her list, since I can’t remember all of it, and she’s more likely to remember what’s troubling her than I am.

“Milk, for the baby” she says, and I wonder why she needs prescription milk – Again, the notes aren’t through yet, so I ask her what the prescription milk is, and determine if it’s something that we can actually supply or not, and check that she’s got an appointment with the New Mothers’ clinic, which does basic health checks for both the baby and the parent, and ask if she wants some literature for the new parents’ group that the clinic runs.

I rack my brains, to see what’s left.

“You said you needed a letter for rehousing?”

She replies;

“Yeah, I’m on the second floor, the lift’s always broken, and it’s playing havoc with my knees.”

I think quickly; If this is only a temporary problem, she won’t need to be rehoused, but it’s definitely worth getting on to the council to get them to fix the lift. I bring up her address, look up the number for buildings maintenance on the council website, and tell her to phone them, writing it down clearly on a piece of paper along with the words “Reasonable accommodation”. If this is a permanent problem… Hmm. I’m already going to see her again in a month, but I tell her to book a long appointment for then as well, to cover both her knees – which since she’s off work and unable to climb stairs are evidently really affecting her quality of life – and her smoking.

 

I look back up at the clock. Three minutes to go.

“Does that cover everything?” I ask. She counts on her fingers;

“Bad knees, weight loss, milk, housing, sickie, smoking, repeat prescriptions.”

I reply;

“On the physio waiting list, booked in for imaging within the next month, got the gym card, booked in for the mother and baby class, you’re going to phone your landlord about the lift and I’ve given you the number, you’ve got your sicknote there in your hand, we’ve gone through your prescription and changed a few things – including giving you nicotine patches – and you’re coming back in a month to tell me how the physio and the quitting are going, and to see what your x-ray has brought up.

“Sorry, I know it’s a lot to remember, but everything that you need to remember is in one of those papers in your hand, and you’ll get a letter from the Trust to tell you when your appointment is once it’s booked. Is that all all right?”

She smiles, looking honestly relieved;

 

“Yes, thank you. Right, see you in a month.”

 

I wish her good-bye, and off she goes. As she gets to the door she says;

 

‘Any chance of a prescription for Calpol?’

It clicks – Prescription for milk, prescription for Calpol; She’s struggling financially, both of these being things that you can buy comparatively cheaply, but that (If you get free prescriptions due to being on an out-of-work or low-earnings benefit, which she may well be since she’s ben sick for long enough to need more than one sick note) a doctor could prescribe. And being on half-pay for sickness, or possibly even needing to take the sicknotes to the jobcentre, will wreck anyone’s sense of financial stability. Thankfully, the council have some advice leaflets and a service to phone to get a foodbank referral and help from the local credit union, and the Citizens Advice Bureau can do the rest. Along with the prescription for Calpol, I give her that information.

 

 

***

Am I naive in thinking that’s both a much nicer interaction, and not completely above-and-beyond the call of duty? The GP sees someone who’s “learned helplessness” and “sufferring from a chronic sense of self-entitlement”, based solely on the idea that they’re working class, have poor social graces, are fat, and are concerned about their weight and joint pain, and seem to be at a loose end financially. I see someone who’s trying to quit smoking, trying to manage their weight, trying to get to the bottom of a health problem that’s bothering them and has stopped them from both working and sleeping, and is running up against an obstreperous GP who won’t even point them in the right direction. This is a GP who sees someone who is in pain and distressed and decides it’d be “fun” to call them names.

I’m baffled by the idea that going to your GP with a long term health-problem is “Being entitled to anything and everything”.

 

 

Treating a Chronic Sense of Self-Entitlement

“She’s sunburnt, elephantine and heavily tattooed. Which may or may not be relevant, but is a fact. She’s also new to the surgery.

Waiving all the conventional niceties, she launches straight in: ‘I need a prescription for all my usual meds plus some extra sleepers. And supplies of milk for the baby. My sickie’s overdue and I need a letter from you to help my appeal. How can I work with these knees? I need them X-rayed. And you need to do something about my weight. And while you’re doing the prescription, you can put on some nicotine patches,’ she pauses for breath, ‘And you can do me a rehousing letter. I need a ground-floor flat coz for some reason they’ve put me on the second floor and the lift never works.’I take a step back mentally if not physically, though the latter’s tempting. This, I reckon, could be fun.

‘I think I can see the overall problem here,’ I say, ‘You’re suffering from a chronic sense of entitlement.’ She narrows here eyes, but I plough on, ‘You’re confusing wants with needs, and because no-one has ever explained the difference, you’ve developed a learned helplessness and dependency which you’re locked into. I suspect no one has ever had the time or inclination to liberate you, but that’s what I’m going to do. Your freedom lies in one word, and that word is, “No”. So that’s what I’m saying. No. To everything.’

I sit back and wait for the fallout. The fact that I’ve folded my arms really isn’t a sign of smug self-satisfaction. It’s actually self-protection. So’s the tin hat.

She leans forward, looks me in the eyes, and begins: ‘I think I can see what you mean, doctor. You’re saying that over the years, I have developed the attitude, perhaps reinforced by health professionals, that I’m entitled to anything and everything. In turn,’ she continues, ‘This has undermined any vestigial ability or inclination I might have had to sort out my own problems, with the result that I’ve developed this unrealistic level of expectation and intractable passivity. The fact that everyone has bowed to my demands has simply, in the long term, led to my own disempowerment. I’ve become a victim of those who have tried to help me, because they have effectively rendered me helpless. So I understand why you’re saying “no”. Indeed, I appreciate the irony that your refusal is, after all, simply a reflection of your own entitlement, as a responsible professional, to tell what you see as the truth. I respect the stand you’re taking and will try to move on from here. I bid you good day.’

With that, she got up to leave.

 
 

Hand on doorknob, she turns and asks, ‘Any chance of a prescription for Calpol?’

‘Sure,’ I say.”

Dr Tony Copperfield is a GP in Essex. You can follow him on Twitter @DocCopperfield

The vultures are in our hearts, waiting for the clarion call.

A couple of days ago, I was linked this video by someone who really wanted to help me learn how to treat Ehlers-Danlos Syndrome without taking any medication for it. I found him in the #MedicatedAndMighty hashtag on Twitter, where he was resolutely telling people that any benefit that they gained from psychiatric medication was “fake” and “switching off parts of their brains” and seemed very confused as to how neurobiology worked.

 

Although he hadn’t heard of Ehlers-Danlos until I told him about it (He was telling me that I really, really didn’t need opiates, really, at all) he very quickly became an expert through watching Youtube videos, and linked this one to me, to educate me better in just how wrong I was to be following a proven regimen agreed on between myself, a hypermobility specialist and a dedicated rheumatologist, borne out by several years of experience and decades of gradually-improving clinical guidelines backed by large-scale trials and even larger scale observations.

 

So, this video;

Here’s the key points of the video. The numbers are time-stamps, and the bulletpoints are a precis of what’s being said.

3.45 – Give up all forms of sugar to reduce inflammation. Give up fruit, bread and potatoes.
4.30 – …Apart from coconut sugar and honey, they’re good sugar.
5.27 – All diseases, including diabetes and cancer, are caused by inflammation
5.50 – Stop eating gluten! Gluten is inflammatory.
7.10 – Balance your body’s pH by eating raw fruit! Meat and dairy will make you acidic.
8.10 – Juice things! But you’re avoiding sugar, so don’t just juice fruit, juice carrots.
8.40 – Food is mentioned as being “Ayurvedically satisfying to your stomach”
9.40 – Claims that leaky gut (ususually permeable intestines) is due to “Rips and tears and holes in your stomach, causing food allergies”
11.00 – Talks about “raw” probiotics.
11.50 – Claims that Cod Liver Oil lubricates the body from the inside.
13.30 – “Buy herbs from Whole Foods because the staff are very knowledgeable about herbs.”
16.15 – Stay away from anything with Wi-Fi, it’ll inflame you, so always use your laptops plugged in.(This goes on, at length, encompassing phones, microwaves and TVs too)
18.45 – “Trust your gut, not your drug-pushing doctor”
19.15 – “Go to a naturopath, they’ll show you alternatives to all the medications that you’re on!”
20.15 – “Nutritional psychiatrist” giving out diet plans to “Build up your happy chemicals after so much surgery”
20.30 – What’s The Mood Cure by Julia Ross? Feels like this needs investigating.
22.00 – Acupuncture. For everything.
22.50 – Naturopaths, again, claiming that they’re trained in genuine medicine as well as woo.
23.45 – EFT, which is tapping on your “energy points” until your feelings come out. Hmm.
24.50 – “Avoid inflammatory foods” The same woo as the EDS society was pushing a while ago, hmm.
25.00 – “Nightshade foods are almost poisonous to our body” (At least they are all, broadly, really related to nightshade – Tomatoes, aubergines, etc)
25.50 – Avoid foods containing lycopene.
27.00 – “Turmeric cures cancer, but I won’t say cancer, I’ll say ‘Starts with C and ends in R’ because I know there’s a Cancer Act out there…
28.30 – “Processed food is the devil, our body wasn’t meant to process it.

And this just makes me really, really angry, that charlatans prey on the pain and horror that people with chronic conditions have, and trick them into believing this kind of bullshit soup. She has good points in there (Mostly “Stay active, if you can, gentle stretches and muscle building” and “Get therapy, if you can”) but they’re lost in the scattergun of not eating asparagus and keeping your mobile phone in a locked drawer.

 

I am scared that she’s wasting time on therapies which make her life arbitrarily more difficult, and ignoring ones which could make her life genuinely better or safer. VEDS is scary, it’s the monster under the stairs for everyone with an EDS-HM or EDS-Classic diagnosis. I understand the urge to just pull up the fluffy blanket and hide under it.

 

I know that many of the things that she’s talking about can be fun, or can give a sense of much-needed control in the face of a horrible illness. I know I do a lot of things which aren’t medically necessary, which I consider to palliate my symptoms, and some things which straddle the boundary between “medically necessary” and “personally soothing”, as well as things which are purely medicinal.

 

For example – On weeknights I swim, then I take my evening medication, then I lie in bed and read the next chapter of the Aubreyad in low-light whilst drinking grog. If I miss one of these events, I will feel worse. But let’s look more closely at them.

 

I swim: This is both physical therapy to build up muscle tone, and something which gives me an enjoyable sense of achievement.

 

I medicate: This is necessary in the management of EDS – Diclofenac to reduce inflammation, Lansoprazole to protect my gut, Diazepam to prevent spasms (when needed) and morphine to prevent pain and poor-quality sleep.

 

I read: This is something which is for enjoyment, and it gives me something to concentrate on other than my symptoms as I begin to fall asleep.

 

My methods here aren’t universals (I imagine that pilates or jogging or rugby would work as exercise, a different cocktail of medications would suit, and reading could be replaced with good food or sex or TV as a relaxing end-of-day ritual), and everyone will have to find their own balance, which may also change over time.

 

But, and here’s my point, more than eight hundred words into the post – People should recognise what is medicine and what is just soothing.

 

I adore my TENS machine. It is zappy and fizzy and feels nice on sore muscles (Et sur la moule, ehehehehehe). It is not medicine, it is just nice.

 

I hate feeling flattened by diazepam. It feels like being stuck under a foot of snow, in a fog bank. It is still medicine, since it stops the dangerous spasms that make my condition worse.

 

I really dislike courgettes, they taste like sewerage. They are not medicine, so I do not eat them.

 

I love having codeine skin. It’s a side-effect of taking morphine, which I take for pain relief. Morphine is medicine.

 

This is another reason why I’m such a firm advocate of the NHS remaining as a free-at-the-point-of-use service; It’s easier to crack on with a course of treatment that’s taking a while for you to feel the effects (Physio, NSAIDs, most talking cures, basically all antidepressants) when you’re not paying out-of-pocket for every week where “nothing happened” – That is to say, loading-in periods, stabilising periods, and even just the time it takes to work out appropriate dosages. It applies to treatments that don’t work as well – After the fourth course of drugs that just turn your spit green and make you want to eat a lot of mustard, it’s easier to feel inclined to try the fifth if you’ve not had to pay for all of them, and aren’t increasingly feeling like medicine is just emptying your wallet along with wasting your time.

 

That’s the big problem with alternative “medicine” – It almost always gives instant “results”. They’re not real, measurable improvments in your condition, of course, but they’re changes that you spot. You have to think before you eat, so any tiny change in your symptoms gets attributed to the food, and magnified along with it, because you expect a change to happen. You feel better immediately after the acupuncture, or acupressure, or gentle tapping, because you’ve spent an hour in a warm, comfortable studio being touched and listened to.  Direct human attention is a powerful drug. As a friend once pointed out to me, even in a non-sexual context, a bit of faffy gentle twiddly massage from your partner can feel nicer than a really competent one from a physio, because it’s just nice to have that sense of intimacy and care.

 

And alt-med practitioners really cultivate that atmosphere of intimacy; Without it, they’d have no business, because other than the placebo “It feels nice!” their art does nothing, and without that sense of “Oh, but my acupuncturist is so sweet and kind, they’re like a friend!” you’d be a thousand times more likely to realise that they’re just selling snake oil, never go back, and tell your friends not to waste their money there either.

 

So that’s why alt med and naturopathy aren’t just harmless fun. They’re deliberately selling “relaxing” as “medication” and that’s unethical.

Care and Caring

(I need to write about the past few days, because Shit Has Happened, but this first.)

 

So, this afternoon, I’ve got the social care person from the council coming around again, to sort out… I’m not really sure what. I think the financial implications, or something. But I’ve been thinking about a couple of narratives on care, which I keep hearing.

 

Actually, this all came about because of a discussion on having children, or not having children, in which someone said to me that I was selfish for not having children, because “I would sponge off their kids to look after me when I’m old”. I reasoned that I would rather pay a carer, instead of derailing a family member’s career or family life, since doing the former meant that I’d get professional care without the faff of family baggage, and would be creating much-needed jobs for usually young, usually poor, usually initially under-skilled workers. So, effectively, I wasn’t sponging off their kids, I was giving their kids a job. I was, categorically, making sure that there was a care industry, which meant that if their kids chose to continue their careers instead of looking after their ageing parents, there’d be a care system already in-place to take over.

 

So, narrative one is that paying a carer is a sign of someone being “abandoned”, and that all care work should be done for free, by family.

 

Let’s poke that a bit:

 

Plumbing is a job that’s usually done in the home, and that pretty much looks like anyone can do it, right? You just turn off the stopcock, unscrew the pipe join, cut it a bit shorter to add a connector, clip the connector on, braze in an elbow-joint, then put the new appliance on the extension. It doesn’t take many tools that you don’t already have, and any extra that you’d have to buy, you can buy cheaply. And you’ll pick it up quick enough.

 

And yet, very few people just expect to do their own plumbing. So why do we expect people to just provide care? Yes, you can probably go to the shops to get food for an ailing relative, but how can you guarantee that you’re doing it adequately- that you’re not forgetting something that they’ve also forgotten, or that you’re doing it at a time that’s right for them, without also making a mess of your own schedule, or how to know the balance between trying to get them to eat better-quality food, and bringing them the things that they like? Beyond that – You know how to wash your own hair, but what about doing someone else’s? How about how to dress them, without causing too much pain or emotional discomfort? What about if they need help with managing their sex life, or getting to an STI clinic, or dealing with incontinence? As a family member, you’re going to find that much more distressing (and they’ll find it much more distressing) than they would with a professional who, when you get right down to the knuckle, is being paid, and who has decided that the renumeration offered is financially “worth” the bother of wiping someone’s arse or making four hundred cups of tea a day.

 

Hiring a carer, or having one hired for you, is no more “being abandoned” than hiring a plumber or an electrician to repair your house is “being abandoned”. In fact – Think how many people with plumbers or builders or joiners in the family who’ll need building work done and will say “Oh, no, I’ll not ask our Andy, he’s got to be busy at work,” or (from the perspective of Andy) “I’ll do it at mates’ rates, but I still need paying”.
And yet, somehow, we forget that caring work – Whether it be the physical or emotional labour – is real work. And the burden does pretty much uniformly fall on daughters – Not always, and certainly not enough to say that sons are exempt, but if there’s two adult children, society will usually expect the daughter to care for her parents, and the son to not, because he’s got his own children to look after.

 

It’s even more pronounced when we’re talking about hiring housekeepers or cleaners -At least a nurse or a carer has some obvious skill that the general population doesn’t have, usually (in the public imagination) physiotherapy, or dealing with IVs, TPN and stoma, whereas people find it more difficult to parse that a professional cleaner or housekeeper will usually be a much better and more efficient worker than anyone could manage for themself.

 

It does look a bit like we’re not counting it as “work” because it’s “women’s work”.

 

And from that, we get to the kind of native suspicion of carers – Think how common the narrative of “My nurse was stealing from me” is, or “The cleaner ran off with the silverware” or “It turned out that the nice girl from the shop who brought my groceries was also selling my painkillers” is.

 

There’s two axes there – Class (“They’re poor, their employers are rich, so of course they’ll be tempted to steal”) and gender (“They’re women, who’ll accept money to do the things that women naturally should just do? They must be defective somehow. I bet they’re not beyond stealing, since they’re stealing already by not performing this labour for free”), and sometimes there’s a racial component too, especially in places where carers or nurses are usually recent migrants or the children of migrants.

 

Then there’s the “Nobody is that good” angle. When we’re being more honest, and realise that being a carer is a difficult job and not paid anywhere near enough for the amount of skill needed, we wonder “Are they doing it for the £8 an hour, or are they getting perks in the form of whatever’s in the fridge, the change bowl, and the medicine drawer?” which often comes in when the families of the person being cared for start to resent the (seemingly) more time that the carer gets with their relative than they do.

 

Even though, as we know, it’s not really “high quality” time, or not always – For every nice day where you sit and drink tea and talk about the war, there’s two where you’re hauling laundry and being reminded that you’re an employee.

 

There’s the other big point of discomfort (Ha, you thought I’d get through this whole post without mentioning class, didn’t you? Nope…) class. Most of us consider ourselves, if not solid working-class folk, at least not the hated bourgeoisie – The kind of people who don’t have aspirations above our place in the world, who don’t think we’re better than other folk.

 

It’s a bit of a paradox that in trying to define ourselves as “Not thinking we’re above ourselves”, we say “Thus hiring a domestic worker degrades them, and us into the bargain”. Because that’s really saying “Being paid for a day’s work is degrading”, or “Being paid to do traditionally feminine jobs is degrading” or even “I think that some kinds of work shouldn’t be renumerated.”

 

There’s nothing shameful in hiring a carer, because being a carer is not shameful. Nobody is degraded by getting money to do housework, or to go shopping, or to clean arses. All of those are jobs that need doing, and anyone that can do them well deserves to be paid for it. In deciding to hire a carer or a housekeeper or similar, you’re not saying that your time is worth more than their time, you’re saying that they will do a more efficient job than you could – whether that be because they’re better at it than you, or simply because that is their job, rather than trying to fit it in around another job – and that they deserve to be paid for their expertise.

 

And all this is even before we get into the social and familial implications – It’s easier to maintain a normal family relationship, or friendship, or partnership, when one participant in the relationship doesn’t have to compartmentalise the difference between “Percy, my friend that I love, and whom I sometimes help when it’s appropriate” and “Percy, the person who needs me to do these tasks for them, or they will starve atop a pile of their own shit” and indeed when the other partner doesn’t have to compartmentalise between “Friend that I love” and “Friend that I rely on to be fed and clean, so dare not piss off for fear of returning to the shitheap”.

 

It’s all the stranger when we consider how much work it was “normal” to contract out at different periods of history – Having a butler or a housekeeper, or even just a cook or a maid, was common amongst the upper and upper-middle classes right up to the Great War, and even now you see adverts for families looking for a live-in nanny or a full-time domestic. Beyond that, having personal servants to wash your hair, help you dress, wake you up in the morning and other remarkably personal duties (Even if, in a small household, that was just one duty of a more general member of staff) was pretty common right into the Regency – Indeed, look at drop-fronted travelling dresses, which became popular with fashionable young upper-class women in the 1810s; They meant that they could get dressed without help, pretty much for the first time. The old cliche of having someone lace you into a corset? Admittedly, it’s always skewed (People get confused between tightlacing, a niche 1900s practise, and corset-wear in general, so always imagine that the reason for having a lacing assistant is because of tightness, not because of the difficulty of putting on a lot of layers, most of them fastening at the back, when wearing a mountain of petticoats, or a pannier, or farthingale, or even much later a crinolene) but once you were into the social strata where you had to dress properly, rather than just skulking around in a tea dress or workwear, if you were a woman you pretty much always had someone to help you dress, even if that was just a friend or a sibling (Read anything by Jane Austen, and note that in the poorer middle-class families, the sisters will help to dress each other. In the richer ones, they’ve got servants). Men as well could expect to have a Gentleman’s gentleman, someone who’d, if not always button them into their shirts, would at least link their cuffs, help with a cravat, set their wigs straight or even just lay out their clothes for them.

 

The degree of personal care that’s considered “personal” changes, along with fashion. I could talk at length about how the smoking jacket set the stage for people going on pub crawls in kigurumi.

 

In short: There are so many reasons that having a paid carer is a good and useful thing, and there are similarly many reasons for having a paid housekeeper.

 

 

It’s International Men’s Day

Hooray!

 

My masculinity is fragile, and I fight hard to hang on to it. Most of the time, the thing that bruises it is someone calling me “Mrs” or reminding me that “Us women are [this] and men are [unknowably different]”. It’s people telling me that I’ll feel [a way that I don’t feel] about [event] because I’m a girl. Every time the internet tells me that masculinity is crap and pointless and evil and that I should abandon it, I hear exactly the same things as I heard as a small child when I was encouraged to “be a proper girl!”, and when the little boys at school were told over and over again that they were bad and stupid and not good, presentable children because they were boys. It sounds exactly like the primary school teachers reminding us that boys were made of slugs and snails and puppydog tails, and girls were sugar and spice and all things nice – So why couldn’t the horrible slimey boys be more like the lovely sweet girls? – Though, of course, if they were more girl-like, if they cried and cared about their appearance and played with dolls, then the exact same teachers would laugh at them and call them by girls’ names and make them very aware that being a girl like that was a bad thing. That the only right thing to be was either a cis girl, or to just not exist, really. Clinging to my self-identified boy-ness in that climate was so difficult that it was frankly perverse. It would have been so easy, almost, to pretend to be a girl, hate myself every day, and have people treat me much more kindly. Maybe even take my injuries seriously – But, no, every time I did pick up an injury, and go to the teacher, I was told I had to decide – Be a “proper boy” and go back out there, or admit I was a “proper girl” and get a sticking plaster and sympathy.

 

And there are the things about my masculinity that I don’t like – I don’t like that I’ve been conditioned to see getting help as “girly”, so it’s something I try not to do, even when it really hurts me. I hate that, in the eyes of the rest of the world, I’m less of a man for having been raped (and by a woman, no less!). I hate knowing that men are more likely to die by suicide before the age of 45 than by basically anything else, and that it’s more common than in women. I hate knowing that men are more likely not to get custody of their children, are less able to find work in the “caring professions” or as primary school teachers, and are generally considered to be “less of a man” if they want to give up work to look after their kids. I hate that being a man within about a hundred yards of a child that’s not your own is seen as sinister.

 

I hate that, in going from pretending unconvincingly to be a woman, to living as someone masculine and effectively-a-man, any expression of my sexuality has gone from being cute and transgressive and a bit naughty, to being an outright threat (Think of the difference between a 25-year-old woman reading Fifty Shades Of Grey on a train, and a 25-year-old man reading a porn magazine). I hate that any expression of solidarity with other men is always considered to be a childish and nasty backlash against women, in a way that solidarity between women isn’t assumed to be anti-men (A man not wanting women on his stag night is a pathetic, retrograde boor, a woman not wanting men on her hen night is just having a fun laugh with the girls). I hate that “LOL FOREVER DRINKING YOUR MALE TEARS” is perfectly acceptable in a lot of feminist discourse, despite insistence that feminism is for everyone and is helping everyone (And real feminism is helping us all, which is what makes it even more baffling). I hate that it’s acceptable to compare men to rabid dogs and bowls of poisoned sweets, as if men have no agency.

 

Today is international men’s day, the day on which we’re supposed to be opening up and saying “Actually, no, men aren’t just The Patriarchy, we’re people with problems and we need to address those problems, and change how we act, and make a world where masculinity isn’t tied into violence, and where it becomes as socially acceptable for a man to admit to being ill, depressed, overwhemed, weak or fallible as it is for a woman to say the same” instead my timeline contains stuff like;

 

male tears mermaid

 

Which is, well, exactly what you want to see when you’re male and suicidally depressed.

 

So, frankly, here’s to male tears and any bloke that’s strong enough in this horrible world to shed them without being ashamed.

Transpennine

So, here’s a bag of worms that I’m going to tip out all over the floor and really work into the carpet.

Body Integrity Identity Disorder. It’s rare, or it’s presumed to be rare, and I first encountered it a long time ago through BMEzine and the body modification world. The stories would show up a few times a year, usually anonymised, of someone having gone through with cutting off a digit, or a limb, and how miuch happier they were in the aftermath, getting used to existing without the offending body part. In the context of a site where things like ear pointing, tongue splitting, urethral rerouting, penile bisections, clitoridectomies, castration, flesh removal, scleral tattooing, PTFE and titanium implants and good old piercings and tattoos were firmly considered to be value-neutral expressions of personal/sexual/artistic freedom, as long as they were done in a sterile environment, with informed consent, and by a trained practitioner. It was extreme, and still a little controversial, but basically just “one end of the sliding scale” where having your ears pierced was the other end. We nodded, we read the long, technical ramblings about the legal and professional requirements for various types of modification, and moved on.

Now the word “Transabled” is coming up a lot more often, and it’s being linked to disability. And not just people cutting off limbs – There’s people asking to be paralysed (Like Chloe Jennings-White), or to be blinded (Like Jewel Shuping), and more still who use wheelchairs or canes or other accessibility tools for not-directly-physical reasons. I don’t think that the number of people has changed, necessarily, just that the narrative has changed from being one about body modification to being one about inherent identity. As, indeed, it might – I know plenty of modified people, myself included, who feel “just a bit wrong” if (for example) they’ve taken out their piercings or stopped dyeing their hair, and in the other direction I know at least a few modified people who felt “just a bit wrong” before being modified in the first place; The common refrain of “I always knew I’d end up covered in tattoos” is common for a reason. So it’s not unusual for discussions of identity and discussions of body modification to overlap (See “The Church Of Body Modification” for a potted example of how strange it can all get).

A lot of people seem to balk at the comparison of transability and being transgender – Usually along the lines of “Transability is just BIID, and is a mental illness, and being transgender is not a mental illness, we’ve already had that fight, we don’t need to have it again.” – and I understand the reticence. Being transgender is, well, hard enough as it is. But that’s the angle I end up thinking about it from; I’m trans, I’ve always* been trans (Though we can go back and forth until we’re both blue in the face over whether I’m innately non-binary and that people have always treated me as such because they saw that in me, or if I’m “not a woman” because everyone has always told me that I’m not) and it’s something that, when I think about it at all, is pretty keenly felt. Not being “out” to anyone wouldn’t make me cis, dressing up as a woman wouldn’t make me cis, using a girls’ name wouldn’t make me cis, they would all at most just make me miserable. It could be argued that, for example, a chest reconstruction is a long surgery, it’s a painful recovery, it’s risky, it doesn’t always result in the chest you planned for, and society will treat someone that doesn’t pass for cis even worse now that they no longer “automatically” pass as their birth-assigned gender. But nobody worth listening to would ever say “We should never offer top surgery, only counselling to make trans people happier in being stuck with whatever gender they were asigned at birth”.

And I wonder if the same is true for the transabled – Even if told to stay quiet, to never talk about wanting to be paralysed or blind or cut off a limb, they’d still be themselves. I see far too many commentors saying “They’re choosing to be disabled!” in a way that you’d never say to a transgender person “They’re choosing to not be cis!”

And this runs up against the other unpleasant implication – Bodily disabled people telling the transabled “You’re appropriating our experience!” sound a little bit like trans-exclusionary-feminists sometimes (For example, Germaine Greer, who links womanhood with having a vagina, or Julie Bindel, who claims that trans women are just men who want to invade women’s privacy and mock them).

I think if someone told me that they really believed that they should have EDS, if they were saving up to have their joint capsules surgically weakened, if they scrubbed their skin with glasspaper every morning to get that “being touched is painful” feeling and hoicked around on crutches and sat down suddenly every few minutes… I don’t know what I’d do. I’d certainly not hate them. I’d probably worry about them, on the practical level – Are they safe? Are they doing anything that would really cause them serious harm? Is there someone that they know and trust who can ensure that they’re not making rash decisions without thinking through the consequences?

But then this gets to another point – So, BIID or transability is talked about a lot in the sense of “An ablebodied person who believes they should be disabled”, but that kind of assumes another really unfortunate thing – That a disabled person’s body will always feel “right” to them. Indeed, I know that for a lot of us, probably the majority of us, it does, especially for people that’ve always had their disability. But much as the phantom pain in a phantom limb is unsettling, neither all nor no disabled people want to be ablebodied. I strongly suspect that the majority of people denouncing the transabled would assume that all disabled people want to be ablebodied, and indeed that’s a big theme in the comments as well; “I hope you meet someone with a real disability, so that you learn that being disabled is a pointless living hell”. Well, it’ isn’t, but also there are definitely a large number of disabled people who wouldn’t really want an abled body. They want society to be better adapted for their needs – Whether those be spatial, social, temporal – but they don’t want to be abled. Conversely, there are those of us who would bite your hand off to have an abled body, who wake up every morning feeling a deep sense of wrongness (“Why don’t my legs take my weight? How can’t I stir this cup of tea?”) and whose self-image and reality don’t match up even at the most basic level. From talking to people, the “answer” there seems to be a mixture of doing everything they can to get closer to being abled (at least on some axes, if not all – For example, someone may well accept the stairlift because it means they can get around the house without using a cane) and a long, solid grieving process over the body they don’t have.

I don’t know, I’m basically just full of morphine and rambling, but if there’s anyone with BIID or who is transabled who’s reading this, I’d love to hear from you. It’s a subject that I’m woefully ignorant on, and that the media and popular perception seems determined to take out of the hands of the people involved.

*Other than for about fourteen months around when I was nineteen. That was weird.

Ask Lots Of Questions, Don’t Eat The Bullshit

I’ve commented before that most zebras seem to be somewhere near the middle of this Venn diagram, and that I think I’ve only ever met a couple of zebras who weren’t on it at all, especially if I broaden “scientist” to include all kinds of research-and-stats-based jobs;

zebradiagram

(Go ahead, zebras, put yourselves in the diagram. I’ll be amused.)

As much as it could really be that there’s a genetic disorder that strikes only bisexual autistic physicists who cam in thier spare time to fund their research and are writing a novel about the whole experience, I think it’s much more likely that it’s more to do with the bias on who gets diagnosed;

All of the above states predispose the zeb to either asking questions, or to having a healthy disregard for social expectations.

The scientist zeb has a background in assembling data and testing theories, so is more likely to work out that all the Just-So stories add up to one overarching condition, and the medic zeb might even have heard of EDS in the first place.

The autistic zeb is more likely to spot the pattern of symptoms in the first place and to insist on taking them seriously, plus probably already has some knowledge of the inner-workings of the medical system, so will know where to stick the claw to get the treatment or diagnosis that’s needed.

The sex-working zeb has already got a foothold in the door of ignoring social mores and pursuing something which society tells them not to, so is more likely to keep asking the doctor the questions that need asking. And they’ve probably got plenty of people-skills, to make sure that they get answers.

The artist or writer zeb is probably better at explaining their symptoms to a doctor than the average ineloquent sod, and the zeb that works with their hands (including the musicians) is more likely to spot the early signs as their work starts to get sloppy and their wrists start to hurt, prompting them to seek diagnosis earlier than someone who barely picks up a pencil.

Finally, the LGBT zeb has already probably found one community that they weren’t born into (see any number of articles on the LGBT community, which is inherited by finding, vs most communities which are inherited by birth or proximity) so will be quicker to find the disabled community and to integrate into it, therein to find other zebs and put a name to their own condition.

(I’d be remiss at this point if I didn’t also posit that, due to the idea of zebra-senpai and just how friendship groups spread, I’d be surprised if there isn’t a self-selecting bias there based on the kinds of people that I and my firends are friends with anyway.)

So here’s a brief “What to expect if you’re expecting to be diagnosed with Ehlers-Danlos Hypermobility or Joint Hypermobility Syndrome”.

  • You’ll have been to your GP complaining of pain, lots of pain, or will have turned up in A+E with a mysterious dislocation. Either way, (In the case of the A+E scenario, after having reduced the dislocation and sent you home with painkillers) your GP will want to take a lot of bloods to rule out autoimmune conditions (Sarcoidosis, rheumatoid arthritis) and infections. The bloods will have come back “all normal”, so you’ll be sitting in the GP’s office, munching co-codamol by the handful, and they’ll prescribe you an anti-inflammatory (Usually an NSAID), a painkiller to take when the pain gets too much (Usually an opiate, probably either more paracetamol-codeine, codeine itself, or dihydrocodeine), will forward you to rheumatology, and will put you on the list for physio. They’ll send you home.
  • The painkillers may or may not work, and you might have to go back a few times, often over the course of more than a year, to get settled onto a regimen that suits you. Talk to your doctor – Try different combinations of every-day (Prophylactic) and on-demand (PRN) medications. Try different families of anti-inflammatories, try steroid injections, try topical creams. Try opiates as slow-release pills, as patches, as injectables, as syrups, as sub-lingual melts. Try higher doses of weaker opioids, and lower doses of stronger ones.
  • The rheumatologist will ask more questions – This is where you’ll be most likely to do the Beighton Warp and get asked about things on the Villefranche list; How do you sleep, how’s your eyesight, do you get migraines, how are your bowels, do you bruise easily. They might want to do a fairly close examination – I was down to my pants and having the skin over my hips stretched, my legs moved around at odd angles, and my back and shoulders really flexed and put through their paces. Thankfully, most rheumatologists are used to patients in pain, so they’ll do this in a warm room, with a comfortable table, and will be amenable to stopping and taking breaks.
  • At this point, you might get a diagnosis, or you might get sent on to a specialist hypermobility service. The big point of the hypermobility service is to confirm that it is hypermobility syndrome, and to get access to more specialist treatment options if they exist in your area (Specialist physio, for starters) and to suggest referral to services like Stanmore’s hypermobility unit.
  • You might be referred to the appliance or occupational therapy departments who’ll fit you up with splints or braces as-needed, will install grab-rails in your house, and will in incredibly rare cases possibly fund you for a wheelchair. I have never known ANYONE get the NHS to get them a wheelchair though, so if you need one, and can afford it, just buy it. It’ll save you grief in the long-term.
  • You’ll also be getting physio, on-and-off, to deal with the pain and the losses of function. This is where the problems often are. The rheumatologist and the hypermobility specialist will say “Physio, once a month, for the rest of your life, to keep your exercises up-to-date and monitor your progress, and probably spot any minor problems before they become major ones.” The local physio department will say “Six weeks of physio, then, sorry, you can’t just keep coming back, we need to treat people who will get better.” then discharge you.

This brings me to the biggest point about getting a diagnosis and treatment;

  • It’s only the people at the bottom of the pile who will be unpleasant. Your GP will call you a faker and try to convince you that you have a personality disorder, NHS Direct will be convinced that it’s not a dislocated shoulder, your local walk-in service nurse will tell you to go away and be in pain somewhere else – But rheumatology and the specialist hypermobility service will have nothing but sympathy for you. thye’ll listen, they’ll believe you on the worst and weirdest of your symptoms, and they’ll often apologise for the behaviour of their underlings. If you can get past the GP, and have a rheumatologist of your own, you’ll do fine.

This, incidentally, all explains why most zebras who know that they’re ebras tend to be highly-motivated and highly-educated; They’ve got to get themselves diagnosed with a condition that doesn’t present in bloodwork, has symptoms ranging from “My knees hurt” all the way up to “I need to be fed intravenously”, and which in all likelihood their GP has never heard of beyond a brief lecture at the start of first year saying “You’re never going to see a patient with any of these conditions…”.

I firmly believe that the NHS needs to have a complete restructure of how it treats patients with rare conditions.

So, what do we do, as zebras and friends of zebras? Look back up at the title.

Go to appointments with a notebook and a pencil. It makes doctors nervous and commensurately less likely to fob you off with “go away”. Plenty of “Can you just repeat that, so I can write it down?” “Right, so if I phone [service] and say you sent me…” “Why is that an appropriate treatment? Why does [problem] not worry you? WIll it get better on its own? Why not treat the symptom whilst I have it then?” And write down everything.

Provide moral support to friends – If they want you in their appointments, go with them. Doctors are less likely to be patronising and aggressive when there’s a witness, especially if the witness looks concerned; “But [friend] is in pain, and [drug] is helping them. I was really worried about them. Why can’t they keep taking [drug]?” “I can confirm that it really is weeks on-end, I’ve been with them the whole time” and possibly the most cutting and guilt-inducing “Thank you for looking after my friend”.

Arm yourself, and get used to quoting chapter and verse – Memorise the exact details of both seminal and recent papers on EDS, on management of long-term conditions, on drug use and responses to other therapies. Learn what interacts with what, what’s controversial or not supported by enough evidence. Don’t just be a parrot either – You need to understand what you’re citing. if you don’t understand, don’t go out on a limb – You’ll sound more intelligent and confident if you stick to what you do know well, rather than if you try to bluff knowing more about a topic than you do.

Independently check everything that you’re told. X is better for you than Y? Go home and find the study that says so, or says otherwise. Z will go away on its own in a week? Find out from other people with the same problem. Just question everything, and let it be known that you’ll question everything, and eventually doctors will stop trying to fob you off.

But the short version is very definitely just “Ask lots of questions, don’t eat the bullshit.”