Rule One of chronic illness: ask for help when you need it
This week, Dame Margaret is off enjoying a lovely lake-based vacation in Minnesota, so our cherished friend & Returning Honorary Dame Rosie Fletcher is joining Dame Sophie for a conversation about living with chronic illnesses. Ours is a pretty narrow conversation, focused on our specific & by definition limited experiences as white, upper middle class, highly educated, white ciswomen. We also think it’s one worth having, as chronic illness is so heavily stigmatized in the US and the UK, where we live. If you’d like to share your perspective as a chronically ill person with us, you can find us on Twitter (Rosie & Sophie), or just hit reply. On with the show.
Rosie: Good morning Dame Sophie!
Sophie: Good morning, darling Special Guest Dame Rosie!
Rosie: So it is kind of a rough morning for me which is ironic, or at least, on topic, as we’re going to be talking through what it is like being extremely charming and vibrant women who also deal with chronic health issues.
Sophie: HAPPY FRIDAY DAMES NATION, we’re gonna talk about our super-unreliable bodies, whooooooooo!
Rosie: Strap in, because it’s a wild ride! Sophie, tell me about the glitches in your programming, if I may be so bold as to ask?
Sophie: you may! My OS started to manifest some rather terrifying bugs during the 1996-97 academic year, when I was a senior in college, in the form of blindingly painful and debilitating headaches that had no unifying or coherent story through which to understand them. I was working on my thesis and was the Hall Advisor for a large floor and for a while, everyone chalked it up to stress, but sometime that fall I asked a friend to walk with me over to the student health center because I didn’t think I could make it on my own and I knew something was Very Very Wrong, and they admitted me for a week, ruling out things like a tumor within my brain and meningitis, but never ruling in what was really wrong with me.
We like both, but also, this lady isn’t wrong
Rosie: “Everyone chalked it up to stress” - extremely relatable response to women’s pain!
Sophie: Yes, particularly when one attends a women’s college that one selected partly on the strength of its academics. Being stressed there is a baseline normal state, and that’s not a complaint: I usually thrive on that. I love having a lot of commitments and balancing them all out, because I love seeing how things connect with & resonate with each other. Anyway! It was months & months of working with a very wonderful neurologist, who just kept ruling out possibility after possibility, until he followed up a left-field hunch after I remarked that I’d recently needed to buy wider shoes than usual. His hunch led to my primary diagnosis, which was acromegaly. It took over a year to diagnose because it’s rare in young women, and its onset is very gradual. Turns out my core presenting symptom, chronic, debilitating headaches, was just a fun gift with purchase! How about you? What bodily nonsense do you contend with daily, darling Rosemary?
Rosie: Spending months and months waiting for a diagnosis is definitely something I relate to! I am now four and a half years into dealing with an extremely crappy body. Although technically, it goes back to January 2013 when I got food poisoning while watching the last episode of The West Wing and ended up in hospital with gastroenteritis. Here is some free medical advice: even if you are an intern on minimum wage and you will not get sick pay if you are off more than a week, it is NOT worth that extra £243 to go back after that week if you need to rest more. You will slowly weaken over a year because your body did not get a chance to recover, then, almost a year to the day later, you will be sitting at the desk of another minimum wage internship googling “leaving job medical reasons” and nearly crying with exhaustion. I went home at 11 that day “to sleep it off” and never returned to work. (OOF I had forgotten how Not Fun this story is?!) It took fourteen months to finally get my M.E./CFS diagnosis but also they also found loads of other bad wiring while investigating the fatigue. I take so many pills that if you shake me, I rattle.
Sophie: Marcus says the same thing about me! He quite rightly wants me to create an inventory of medications & dosages so that if I have to be hospitalized for any reason (not that this is super-likely, but be prepared!) he’ll be able to do more than shrug frantically while some resident hollers for a CBC, chem 7, and so on. I’ll put it on my list of things to do this week.
Li’l Busby Berkeley Pharmacopoeia
Rosie: I have the cutest pillbox! My Sunday night ritual is get into clean bedding with tea and toast and watch something extremely wholesome like Bake Off and refill my pillbox for the week.
Sophie: I should do that. I am real haphazard about it. Not that I miss dosages, just that I set out the next day’s medications -- on the countertop, or maybe in a little glass bowl, if I’m feeling very fancy -- as I get ready for bed. You’ve very smartly turned a non-negotiable chore into a lovely ritual where the chore is just part of your cozy, comforting routine.
Rosie: I am on a 211-day streak of taking my medication - but that’s the thing, isn’t it, having a permanently malfunctioning body is so much work! I have to put so much time and effort and organisation into refilling prescriptions and getting blood tests and attending clinics. Because my levels of fatigue are so high, I haven’t worked properly in over four years and looking after myself is my full time job. I have to plan around any activity I want to do -- and by activity I mean anything and everything from cleaning my teeth to making lunch -- because my body is going to overreact to any activity and need to rest.
Sophie: God, that is exhausting to think about. I think the closest experience I’ve had to what your life is all the time is when I came down with mono -- what you call glandular fever in the UK -- 4 or 5 years ago and had to sleep alllllll the time for over a month. It was closer to 8 weeks, I think, because at first it was an ear infection, and I thought it was just lingering. You’d think that I, a person who is A Clever Girl professionally, would have known to get myself seen to pretty quickly, but noooooo. I was sick as a dog for a good two weeks and it finally occurred to me, “oh, the infection is gone, but you’re not getting better, you’re super-tired all the time, you’re not pregnant, ohhhh, maybe this is mono.” Ding ding ding!!! Anyway, that was awful but very short-lived, and I’m so sorry that it’s your daily experience. Though it sounds like sometimes it’s more of a “spin the wheel to see what type of symptoms you’ll contend with today on top of your usual stuff!” experience. Is that right?
Rosie: Oh totally! Like this morning, I woke up at about 3am because I was in so much pain - muscular and joint pain is just one of my fun symptoms! - and I had to wait for my painkillers to kick in before I could get back to sleep, which takes about 90 minutes on a good day.
Sophie: NINETY MINUTES? NINE ZERO? For real???
Rosie: Yes, I should conceivably investigate something stronger. Like a mallet to the head.
Sophie: I ask Marcus & Nell to chop my head off regularly & they are big meanies who won’t do it. I offered to buy them a really high-quality guillotine & everything, but nooooooo, something about “we don’t want to do a murder” and “we love you too much” and “all that blood would be hard to clean up”. Jerks.
We reserve the right to be Very Dramatic and Frequently Bleak in our humor
Rosie: That is so rude because bodies are an absolute con and no one should have one in my opinion.
Sophie: oh, my god, yes. I mean no. I mean, UGH, BODIES. (This is the title of an imaginary podcast co-hosted by me & Kathryn VanArendonk, where we just check in by saying UGH, BODIES and then present our cases for things like transferring our consciousnesses into elegant, self-propelled jars. I really like this idea but it would mean giving away all my clothes and I am too vain for that. It’s a conundrum!)
Rosie: Is it too broad a question to ask how living with an Ugh, Body has impacted your life?
Sophie: I don’t think there’s a single area of my life that living with chronic illness has not affected. I was symptomatic at 21, and am 43 now, so I’ve spent more than half my life with incurable, invisible illnesses. I would never describe my health as a hobby, but that’s basically what it is. I think about it every day, I work on it every day, I’ve made choices about where to live and work, how many children to have, when to go outside, where to stay & how much to do when I’m away from home, what to eat, when to go to bed, how many social plans to make, all on the basis of how they’ll affect my health and how my health might affect them. The thing that makes me angry about this is that a real hobby is one I enter into purely out of my own interests & enthusiasms. I’m not enthusiastic about managing my bodily pain. I don’t get psyched to make appointments for fasting bloodwork or a colonoscopy (which I will be having later this month, due to the enhanced risk of acromegaly patients developing colon polyps, which can turn cancerous, wheeeee! Seriously, though, the procedure is a breeze and the prep has improved markedly over the years. If any Dames Nationals are feeling anxious about a forthcoming colonoscopy, I’m happy to yell about this -- in an informative & helpful way -- with you on Twitter or by email. Just hit reply). Living in this unwell body that nobody can tell is unwell just by looking at it and that I have to take care of even when I don’t want to, is, you know, fine, but it’s not what I would choose, if given the option.
And the thing is: I know I’m insulated in every way by the privileges of my race and class and educational attainment and health insurance. I’m still able to hold a job, I’ve always had great medical coverage, I have easy access to an endocrinologist who is an expert in my rare disease and has given me excellent guidance over the years, and my family and friends are incredibly supportive. It still sucks. How about you? Is there any area of your life that ME/CFS hasn’t snaked its nasty little tendrils into?
As ever, Wayne Campbell’s jokes are also full of wisdom
Rosie: Ha, nope! Not at all. Everything from big things like where I live to what I’m able to make for lunch today - that’s all dictated by my health. I’m on the verge of moving back in with my parents and “normal” work is beyond me and romantic relationships seem like a laughable impossibility. It’s not exactly what I hoped 28 would be. That being said, I’m quite a happy person! Aside from the clinical depression and the miserable state of my body, I’m fairly chipper.
Sophie: Weirdly, same. My neurologist has remarked on it more than once, sort of saying, “you know, you’re extremely well-adjusted.” Put it on the scrolling marquee on my eventual gravestone! Part of it is that I can pretend acromegaly doesn’t affect me because it’s a very slow-moving internal car crash. My headaches are pretty well-controlled now -- quarterly botox injections have moved my baseline of pain down. I have some pain every day, but it’s manageable, and I have an arsenal of migraine abortives to help me when I need them -- and that makes a huge difference.
I hypothesize that having become ill in adulthood, I at least had a solid 20 years of knowing what I like to do and developing ambitions. Having been encouraged to pursue my curiosities & interests all my life, I continue to use those things as grounding mechanisms. I have migraines & this weird disease, and I’m still me. It helps that the things I love are mostly indoor hobbies, so maybe it’s not so weird that my outlook continues to be pretty enthusiastic, if not always 100% sunny. I don’t feel particularly cheated by knowing I’m an unlikely candidate for hiking The West Highland Way, for example. And I take a certain defiant joy in continuing to relish a lot of the things I’ve always loved, though in some cases my experiences have been much more circumscribed than I would have anticipated before I got sick.
Honorary Dame Rosie coping admirably with chronic fatigue.
Rosie: Is here a good moment to pivot to talking about whether we consider ourselves disabled and when the invisible becomes visible?
Sophie: Yes, please! Tell me all about it!
Rosie: I find this such a fascinating and frustrating experience because I can pass as able-bodied. I just have to not be holding my walking stick. And I am not what people think when they think “disabled” because I am young, attractive, nicely turned out. But I have just returned to walking with a cane again and got my first stranger looking at my face then at my stick and then at my face again and it is so fucking MUCH you know? Like, you need to work on your ableist expectations in your own time okay?? Having a disability doesn’t prevent me from accessing liquid eyeliner, jeez. Once a guy I had just met at a party said “I hope that’s a fashion choice” while pointing at my stick and like, come on dude, do less.
I only gave up using a cane because I was in NHS M.E. treatment last year and my psychotherapist - who was otherwise great, therapy is the absolute bee’s knees - suggested it was keeping me feeling ill, like a totem of disability, and encouraged me to stop using it. Which I did! And yes, it felt good not to use a cane, but it didn’t actually stop me needing one and was not some kind of psychic bond to my poor health. Mobility aids are an absolute moral neutral and it’s everyone’s reactions to them that make them suck. Also my cane is extremely super cute??
Sophie: Oh, it is! That shade of blue is lovely. I have a lot of conflicted, jumbled-up thoughts and feelings about how I see myself, and I know they are super tangled with a bunch of internalized ableism. Like you, I don’t think my body scans immediately to any onlookers as disabled. I know conceptually that my life has value regardless of the status of my body, and also I put a lot of stock in being productive and hitting achievement goals for myself. I love my work and want to continue to contribute substantively to my field for decades to come (which I may as well do, because I assume full retirement in the way I grew up understanding it is not going to be within reach for me before I turn 75, at the earliest). Would I still be able to do those things -- and would others consider me capable of them -- if I were to start identifying as disabled? I really don’t know and am honestly afraid of finding out.
And all of those thoughts are further complicated by my longstanding belief that my migraines are the most boring thing about me, and it makes me very disproportionately mad when people ask about them as a small talk topic, which happens a lot. Over the last 21 years, thinking about my headaches, pursuing treatment for them, accommodating them, and predicting them has taken up so much of my time and cognitive function that I really resent talking about them in any settings other than ones I specifically choose (such as this one). I appreciate people’s concern, but I’d rather they ask me about something I’m interested in: What’s the best book I’ve read recently? (It’s Dead Girls, by Alice Bolin, who co-edited this very newsletter back in June) How tall do I think Nell will grow? (I think 5’5” is likely) Do I think Marcus & I will buy that nice squishy couch we lounged on at IKEA this week? (Yes, in charcoal gray, with a bunch of nice new couch pillows) What’s the plan for Harry Styles’ suits now that his tour has wrapped up? (Will they go to a charity auction? Does he have a fashion archivist on staff? How and where are they being cleaned & stored?) I’m a sparklingly witty & engaged conversational partner on a host of topics, and someone chooses my headaches????? as a thing to discuss? Listen, I know that these queries come from a loving place, but no, thank you, good day, sir. If I want to talk about my ailing body, you can be sure I will bring it up! I also know that it’s a huge privilege for me to be able to evade lots of questions about my health because nobody can see my illnesses unless I choose to make them seen.
Rosie: HMM this is so interesting because I super love talking about my health?? It just never occurred to me not to ALTHOUGH you are right about the nightmare of health as a small talk topic. Especially when I was more ill and not freelancing, the question “So what do you do?” made me want to collapse into a small pile of ash and be lovingly swept away by the wind. My friends are good, they ask “How are you and I mean it” because “How are you?” to someone with a chronic illness is...not a good question when the expected answer is “Fine, thanks” as social lubricant and really I want to say that I spent the whole day in bed to be able to do this and I am in colossal pain and wish to be left propped by a door like a beloved umbrella. Find me on Twitter though and I have zero boundaries on health stuff. If I am bored in a hospital waiting room or awake at 3am, I am probably tweeting about it.
But then I quite actively describe myself as disabled. I kind of love labels? My friend was trying to work out why she thought I’d get on with someone and then she said, “Oh I know, it’s because you both define yourself by the things you love.” Which is true! I like to be easily defined. It’s not just that I knit as a hobby - being a knitter is a big part of my identity, see: my tattoo. Being able to call myself disabled gave me a shape to pour myself into when I suddenly lost all the things that I could build my life around. I didn’t have a job and I could do very little and being able to call myself disabled gave me something solid. (The bullshit nature of capitalism becomes immediately, laughably apparent when you are unable to engage with it. So I can’t work and I’m not financially productive? That’s your fucking problem, pal, not mine. My value is not diminished because I don’t earn a wage.) And disabled isn’t a pejorative term. I say this to myself as much as anyone else. It’s complicated! Internalised ableism is a BEAST.
Sophie: It is, and I’ve been thinking for a while that it’s the next big internal challenge for me to address. I want to think it through now so I can do something worthwhile with the privilege I have, while I have it. I also feel weird about claiming a marginalized, deeply oppressed and endangered identity that would be optional for me. That seems very not-right for me.
Rosie: Well, externalised ableism could probably do some work on itself too. And describing yourself as disabled is a choice and a complex one at that. Phew! What an exhaustive review of an exhausting life - and honestly, I could keep going FOREVER on this. Find me on Twitter and I will be doing just that!
Sophie: Please DO find Rosie on Twitter; she is a delight and a balm, and also smart as hell and someone you always want in your corner. Thank you so much for spending this week talking with me about these unreliable meat-bags that are trying to murder us every day. Rosie, tell the people where else they can find your excellent work.
Rosie: Oh bless you Sophie, this has been such an amazing conversation to get to have. Well, first and foremost, former guest editor (and my big sister) Jessica and I co-host Rosie and Jessica’s Day of Fun, a fortnightly podcast that is like a cup of tea with two of your most delightful and creative friends and there are over one hundred episodes to dive into. I’m also regularly on BBC Radio 4’s The Film Programme where I have a segment on feminism in the movies. Mainly you will find me in bed, gently praying for death (or adequate funding for M.E. research!)
Sophie: I very sincerely hope for the latter, obviously. Thank you again for making time for this conversation — dear readers, to accommodate our respective schedules and well-being(s?) we collaborated on this conversation over the course of three different writing dates this week.
A Chronic Illness Link Buffet
This is iconic & funny & perfectly delivered, but it’s also a lie. UGH, CULTURE, WHY SO COMPLEX?
I (Dame Sophie) think that laziness vs. rest is a harmful, useless frame, so as I do with things I think about, I wrote about it! This piece is a good pep talk for anyone who gets caught in the trap of berating themselves when all they’re doing is caring for themselves, and has a good link round-up at the end, if I do say so myself.
I (Honorary Dame Rosie) also think this is a useless binary and made a video diary to this effect for Late Night Woman’s Hour on trying to get anything done when all your body wants to get done is nothing. For more on this topic, read Esmé Weijun Wang’s piece in on her struggles with late-stage Lyme disease and her own ambition (guess which was winning when she wrote it).
I live under a Conservative government whose welfare reforms were described by the UN as “grave and systemic violations” of disabled people’s human rights. What a laugh riot! I’ve written a lot on this subject for the New Statesman, and although this piece on incentives to get off social security is now three years old, it is as relevant today as it was then. You know how in Call the Midwife, the NHS has just come in and there is sufficient social housing and the government is trying to take care of its most vulnerable citizens? It is the opposite of that.
Of course, chronic illness doesn’t only affect the sick person; its effects reverberate throughout our familial and social circles. For some of the best writing out there on the unending work of caregiving, you can’t beat Kate Washington. Her excellent newsletter, Already Toast, includes updates about caregiving, essays she’s published, food, and lately, a Jane Eyre book club. You may also recall she co-edited an issue of TBD back in March.
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