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@savage-and-hardy
i've been chronically ill since 2019 & i need somewhere to talk about it. it's taken the better part of six years, countless medical tests, and barely being able to work to finally start coming to grips with being disabled. my real-life community is mostly non-disabled, and i haven't had a personal reason to delve much into disability theory/writing before, so this blog is meant to be a sort of hybrid diary and commonplace book as i continue to learn and try to find some peace.
Seline Burn (Swiss, 1995) - Ariadne's Thread (2025)
[“Zena: What have you had to learn—or unlearn—in your nursing practice in order to provide health care in ways that feel aligned with your values and political commitments? How has this shaped your practice? How has it shaped your work as a nurse educator?
Ronica: A big part of what I’ve had to unlearn is what a “healthy” patient looks like. There is a primacy about health, healthy bodies, and healthy communities in health care that really needs to be rejected. Very few people fall into those categories. How many people do you know who would say, “I’m a completely healthy person”? And why can’t we be healthy while we’re using drugs, or diabetic, or fat, or neurodivergent, or in a wheelchair? Why aren’t those considered to be healthy bodies and minds, too?
I’ve had to unlearn the narrow view of health I was taught, because a big part of health care is to imagine a “healthy” body as one that is white, cishet, nondisabled, thin, and young. Often, when we say “healthy,” one of the things we’re implicitly communicating is, is this person worthy? Are they worth being alive? Health care often tries to take ownership of people’s health journeys in a way that’s completely false. It’s not helpful to the patient or for greater understanding of the communities we’re serving.
Although I rarely use this terminology when I talk to patients, part of my job is to help them reframe themselves in terms of what they’ve learned a healthy person is, so that they are included in this vision in a way that makes sense for them. There are so many times when my patients will come in and they’ll be like, “I fucked up and I used heroin twice in the last week” and I’ll say to them, “Okay, why did that happen? Was there a trigger or something that happened?” And then their trigger will be so intense that I’m like, “I can’t believe you only used heroin twice in the last week! It’s amazing you knew the way you needed to cope and did it because not everyone is capable of doing that.”
In health care, we don’t pay enough attention to the cumulative effects of chronic stress (allostatic load) on people’s health. We don’t talk about microaggressions, being kicked out of your home by your parents, societal rejection, or what it’s like to live in a place where political leaders are trying to legislate you out of existence.
“Resilience” is a troubling word, but if we’re going to talk about it as a thing, we need to know what it is for everyone; not everyone is under constant, unending attack and trying to emotionally and otherwise grow from there. I would say pretty much all my patients have PTSD and that’s where I’m working from. It’s inherently biased to say some people are resilient and some people aren’t.”]
Putting Yourself on the Line Interview with Ronica Mukerjee, from The Care We Dream Of: Liberatory & Transformative Justice Approaches to LGBTQ+ Health, edited by Zena Sharman, 2021
Savannah has now lived with severe ME for several years - but the Queen Elizabeth Hospital in South London is putting her life at risk
In an email to her primary doctor on 13 January, Savannah wrote: “Since 4 January, I have eaten five times in total. These were not full meals and were repeatedly interrupted by retching, heaving, and emesis until intake became impossible. This starvation is not by choice. It has occurred directly as a result of the hospital removing Cyclizine, a medication that is medically necessary for me to tolerate food, fluids, and other essential medications.”
Her Gofundme & details to how funds will be used:
Very Severe ME patient 23 year-old Savannah Victora-May is at … Sam Pearce needs your support for #SevereMErgency:Save Savannah from dying i
Please donate to help Savannah if you can, and spread this if you can’t. I can’t think of a more blatant example of medical racism and sexism in the UK than this.
“People ask me, “Have you tried yoga? Kombucha? This special water?” And I don’t have the energy to explain that yes, I’ve tried them. I’ve tried crystals and healing drum circles and prayer and everything. What I want to try is acceptance. I want to see what happens if I can simply accept myself for who I am: battered, broken, hoping for relief, still enduring somehow. I will still take a cure if it’s presented to me, but I am so tired of trying to bargain with the universe for some kind of cure. The price is simply too high to live chasing cures, because in doing so, I’m missing living my life. I know only that in chasing to achieve the person I once was, I will miss the person I have become.”
Alice Wong “Disability Visibility: First-Person Stories from the Twenty-first Century”
bodies should have crash logs. why the fuck did that just happen.
““The mannerisms that help define gender - the way in which people walk,swing their hips, gesture with their hands, move their mouths and eyes when they talk, take up space - are all based upon how non disabled people move…The construct of gender depends not only upon the male body and female body, but also on the non disabled body.””
— Eli Clare, Exile and Pride: Disability, Queerness, and Liberation
“I no longer have a gender. Rather, I have a wheelchair.”
—Christina Crosby, A Body, Undone.
it's very important that disabled people are allowed to make bad decisions actually. that we're allowed to do things which cause flare-ups. that we're allowed to take a risk and get it wrong. that not every single second of our day has to be about playing it safe and being well-behaved and staying within our limits
and on the days when we deal with the consequences of those mistakes and bad decisions we're still worthy of a) sympathy and b) pain relief. just as we are if our illness or disability is the result of our choices in the first place
also tbh sometimes it is MEDICALLY important that you take risks and fuck it up because playing it safe can cause "safety" to shrink. can convince your brain that everything outside of those bounds is forbidden. can increase your body's response to threat because everything unfamiliar becomes threat because you've taught it that it's not allowed to do those things because they're dangerous. and if they're dangerous then they're painful and the pain gets worse and the limits get smaller and your life SHRINKS
this is not true of all conditions (for some, pushing through can have a lasting negative impact, i'm not disputing that) but maybe trust people to know whether it's true for their own condition and allow them the autonomy to weigh up the risk and the benefit
just gonna drop this here also to point out that this is not a new concept
i've been thinking a lot about illness and recovery narratives recently. going back to what alice hattrick said, that all writing about illness is retrospective, that "you cannot tell about it gradually, only look back upon it." i think what hattrick is trying to say is that the act of writing, to say nothing of the additional effort of re-reading and revising, can't be done when we are at our most ill. we can only attempt to capture the feelings from memory.
i don't think hattrick is arguing that we cannot write at all when we're ill, but i do think that is often the assumption made by those who are not ill, not disabled. or, maybe the assumption is more insidious than that. maybe the assumption is that any narrative of illness must include a recovery, or that the very act of writing a narrative - even if it does not include recovery - means that the writer must have recovered.
hattrick writes that narratives of illness do not have a beginning, middle, and end, but rather that there is a before and an after. i don't know if i believe in either option. as someone with a chronic illness that will almost certainly be with me for the rest of my life, i certainly don't buy the former. by the time my time being ill ends, there will be no recovery, and regardless, i will not be around to write about it.
but equally, where would i place the marker before which is "health" and after which is "illness"? with no known root cause, how could i know? should it be placed at the time i first got what turned out to be a series of chronic strep infections? or when i was in grad school and lived for two years in an apartment infected with black mold? or when i first started to notice my body behaving in ways it hadn't before? or when it finally became serious enough to convince me to see a doctor? or when i had to stop working?
all this is to say, i'm becoming disillusioned with narrative at the same time as i am seeking out the narratives of others in hopes of lessening my own feelings of isolation. i don't have a good answer for any of it.
jennifer m. silva, from coming up short: working-class adulthood in an age of uncertainty, 2013
["The Self as Risk
What makes the therapeutic narrative as a conduit to adulthood most problematic is that it transforms the self into one's greatest obstacle to success, happiness, and well-being. Indeed, the therapeutic narrative leads young people to make themselves the heroes, victims, and villains of their own lives (See also Furedi 2004; Moskowitz 2001). In teaching young people that they alone can manage their emotions and heal their wounded psyches, the therapeutic ethos dovetails with the neoliberal ideology in such a way as to make powerless working-class young adults feel responsible for their own happiness. In a neoliberal world of unpredictable markets, fragile families, hollow institutions, and anemic safety nets, the self--alone and uncertain--is endowed "with the power to make or unmake itself" (Ulluoz 2008: 131). Indeed, the vast majority (n=70) of informants reported that they viewed themselves as their greatest risk. As Kelly, a twenty-eight-year-old line cook, declared, "When I start feeling helpless, I just have to make a conscious decision to not feel that way. It sounds easy and it's really not. There's just no other choice. No one else is going to fix me but me."
Their foundational belief that they are completely and unconditionally responsible for creating a good life leads young people to examine their personal traits and behaviors for signs of weakness that could explain their precarious lives. For many, the fear that they will not take the "right" risk looms as a logical explanation for failure. Candace, the young black women who has overcome a family legacy of drug abuse and poverty, as well as depression, explained, "Um, the biggest risk is putting too much out on the line with my family. Being scared to fail. Being scared, the unknowing, yes. Because their will be certain things I won't do that could make me a stronger person, could make me more success [sic], but I'm just afraid of doing it because it's a chance. It's a risk."
But it is Delores, a thirty-four-year-old white woman, who most powerfully demonstrated the cruelty and injustice of the mood economy. When we first met, she was working the cash register at a bakery outside of Lowell where I often stopped for coffee on my way to an interview. Judging her to be a possible interviewee, I asked if she would like to participate in my study. A few days later, I returned to the bakery during her lunch hour to her about her experiences of growing up.
Delores's father was laid off from a shoe factory when she was young and never found stable employment again. Learning from an early age that work is precarious and the future is unpredictable, she recalled: "The way I grew up, we grew up with nothing and we were never told what to do with it if we ever got it. In a lot of ways, I feel like I'm living the same way my parents are. Just...day by day." Delores explained that she had been struggling with depression since high school. A few years ago, she got pregnant and her boyfriend insisted she have an abortion, which led to a "downward spiral," a tumultuous breakout, and a spending spree that left her tens of thousands of dollars in debt.
"D: I took a nosedive again. I decided I wanted to try medication. I went in and I was diagnosed. I went into a study because I didn't have any money. It was on the radio I think. But it was a study to test the effectiveness of concentrated doses of Saint John's Wort against Prozac. It was a study, so I didn't know what I was on whether it be sugar pills, Saint John's Wort, or Prozac. But after a certain amount of time if it doesn't work they take you out and put you on Wellbutrin, which has been shown to work on a wide variety of people. It wasn't working, so they put me on Wellbutrin, and I was on that for awhile and then they switched me over to Prozac. I guess it's not so bad if I remember to take my pill every day like I'm supposed to. But when I get off kilter I get very stressed and then I'll do impulse buying. Like, oh I don't care, I'll just spend the money. So that kind of screws me. I would like to be good and do what I am supposed to do, but then I get so upset and I don't want to do anything. I just don't want to think about bills, I don't want to pay anything...I just..."
Like many informants, Delores explained her problems in the present through the lens of her mental disorder. At the time of the interview, she told me she was developing new ways of managing her depression with remedies found on the Internet: drinking copious amounts of caffeine, smoking marijuana, and illustrating children's books to relax.
A few months later, when I was back in Massachusetts for interviews, I stopped by the bakery again, but Delores was not there. I asked her co-worker, Lindsay, whom I had gotten to know through my frequent visits, if she was still employed at the bakery. Delores, she informed me, was suffering from another debilitating round of depression: she had frequent migraines, could not get out of bed for weeks, and had eventually been fired for missing too many days of work (which meant she had also lost her health benefits). During her last few weeks of work, she had been caught drinking beer in the back kitchen and was suspected of stealing money from the cash register; there was no chance that she would be hired back. I left the bakery feeling confused and sad, trying to reconcile my memory of the soft-spoken, solemn woman who had kindly donated her time to me with the erratic, irresponsible behavior described by Lindsay. Then, about a year later, after I had moved back to Boston, I ran into Lindsay again. "You'll never guess what happened," she said, tearing up. Delores, she informed me, had died just a few weeks before of cancer. Her intense headaches, extreme fatigue, and behavior and emotional changes were not caused by depression, but by a malignant brain tumor that went undiscovered until after her death. There are treatments for brain cancer, including surgery, radiation therapy, and chemotherapy, and there are also ways to improve one's quality of life. But Delores saw the world through the therapeutic lens, attributing all her suffering to psychic wounds. When she lost her health insurance, she continued to treat herself with home remedies, trying until the end to heal herself. Viewing the world through the lens of the their therapeutic narrative, it never occurred to her to see a medical doctor for her headaches, not that she could have afforded it. Delores's death is a tragedy, one brought about not only by a lack of material resources, but also by a cultural logic that makes self-management the taken-for-granted, and indeed only, solution to pain.”] jennifer m. silva, from coming up short: working-class adulthood in an age of uncertainty, 2013
i’m gonna hold your hand with a glove on when i say this
when disabled/chronically ill people tell you they can’t do something, then that is not your cue to tell them that they can actually or that they’ll always find an excuse if they’re looking for one.
when a disabled/chronically ill person says they can’t do something, sometimes that doesn’t mean it’s outside the realm of possibility, sometimes it means if they (attempted to) do that, they will seriously hurt themselves.
when a disabled/chronically ill person says they can’t do something, sometimes it’s preventative care, and they refuse to do that thing to prevent a flare up from happening/their symptoms getting worse in the first place.
disabled/chronically ill people are not “looking for excuses”, they are giving you reasons why. something they don’t even have to do! so maybe just accept the reasons they give you.
Werewolf with a cane, brought to you by my achey joints
If grief is time without its flow - only things happening - then sickness is flow without time. When the chronically ill grieve, they grieve for event-based time, for the sense of one thing after another, for a day that is not like any other day. And this is what everyone feels in quarantine, inside, inhabiting the fear and loss before the grief can begin. Except some of us have already been grieving for a long time.
Alice Hattrick, Ill Feelings
Lockdowns have afforded those in the kingdom of the well insight into the kingdom of the sick. Even before the news of long-Covid recoveries, it felt like everyone was hovering on the edge of crip time, characterized by uncertainty, disbelief, and loss. Most people would pull themselves back into normative time. Some would stay forever. Maybe I am projecting. Everything in between is warped, officially sick.
Alice Hattrick, Ill Feelings
NICE published an initial version of the revised guidelines [for ME/CFS] in November 2020 as part of its consultation stage. [Graded exercise therapy (GET) and cognitive behavioral therapy (CBT)] (as a treatment option) were out, and 'energy management,' or pacing, was now to be advised. The committee had considered the qualitative evidence and their own experiences of GET and CBT for erroneous illness beliefs and found it wanting, recommending not to offer GET, structured activity, or exercise programmes that are based on deconditioning as the cause of ME/CFS. The message on illness beliefs was also clear. CBT was now only to be offered to people with ME/CFS who could use it to support them in managing their symptoms and reduce the psychological distress associated with having a chronic illness: 'Do not offer CBT as a treatment or cure for ME/CFS.' It was a positive outcome, but a lot of damage had already been done - decades of misguidance and neglect, funding treatments that regarded the diagnosis as symptomatic of a 'culture of illness,' justified by the notion that people with ME/CFS were deconditioned, that their illness experience was a metaphor for unproductiveness under neoliberalism, rather than backing patient-forward biological research. 'I learned that in convalescence after a severe assault, the body goes into protect mode, so if it isn't getting space to recover, it shuts you down by bringing an embodied memory of the illness,' read a follow-up post by the Professor of Tropical Medicine with long-Covid. Total convalescence, not graded exercise, was being advised to anyone with long recovery times. If any good was going to come out of the neglect of ME/CFS patients, it was that long-Covid patients were not going to suffer the same fate. Nevertheless, total rest, and therefore recovery, is not accessible for everyone who contracts a virus like Covid: 'What about people less privileged... pushing themselves because they have no choice will lead to further illness, suffering, and distress. They are being left behind.' He also highlighted the inequalities at work in recovery: 'What about the minority groups, the single parent households, people on zero hours contracts, where long convalescence is not an option?' These people - the ones without job security, who are raising children on their own, who are already disabled, or belong to ethnic and racial minority groups - have always been the most maligned. They have always been more at risk because of the choices made by leaders, and now they were more at risk of both contracting Covid and of a longer recovery. It's chronic.
Alice Hattrick, Ill Feelings
[emphasis mine]
Fatigue is being worn out, but it is not a fair consequence of exertion. Fatigue is not a lack of energy, it is its total absence. Fatigue is not exhaustion because exhaustion belongs to the healthy, to the productive; it is the result of doing. Fatigue is the total negation of productivity. It is a force on your body. It is dragging downwards. Fatigue is not doing what you want to be doing, and then it is not remembering what that was to begin with. It is the opposite of joy, meaning fatigue is a category of feeling, except it is a feeling you have in your cells. Fatigue stops you working, and it is work. It is laborious and laboured. Fatigue is punishing and a kind of punishment. Fatigue is not worth googling. Fatigue is an effect; it is exhaustion, sometimes without cause, and without solution. Fatigue is exhausting. Fatigue fucks your 'cause and effect.' It is made worse by further exertion, and, sometimes, it is relieved by the same means. It might be relieved by long periods of inactivity or compounded. Fatigue is being awake for three days. It is mystifying, and, in some cases, deadly. Fatigue is not restful; it is the body in resist.
Alice Hattrick, Ill Feelings
'Fatigue' during periods of lockdown is used to mean being fed up, justification firstly for defying the rules so you can do what you want, so you can go about your 'normal' day, and to excuse the government officials flouting the rules. 'Fatigue' does not refer to crippling exhaustion, or actually feeling ill - it means 'sick' of not doing what you want to do... The striking thing about the use of the word 'fatigue' is not what it says about the government - that any excuse would do to keep things as 'normal' as possible and prevent full economic collapse - but that fatigue can be assumed as an excuse for breaking the law because it doesn't really exist. I still don't know what fatigue is. I cannot explain it. But I know what fatigue feels like. I know its effects.
Alice Hattrick, Ill Feelings
