By Alex Haagaard
A society is a group of people living together in a way that is organized by certain accepted ways of thinking and of doing things, called norms. These norms affect people differently. People who are harmed or excluded by a society’s norms are called marginalized or oppressed.
Some norms affect people’s health. These are called social determinants of health. People who are marginalized tend to experience social determinants of health that make them sicker, both physically and mentally.
This blog post talks about how social determinants of health have affected the author’s physical and mental health over the past year, and how their experiences with healthcare have done a poor job of responding to these factors. It uses the author’s experiences as a starting point to talk about why health research needs to become better at addressing social determinants of health.
This is a long blog post, so we have broken it up into sections to make it easier to read. We have displayed each section in its own collapsible text box with a heading, to make it easier to keep track of where you are reading.
Last month, my dentist found a cavity. It got me thinking about social determinants of health – or more specifically, how we think about social determinants of health. But first, it made me feel ashamed.
“Remember to brush and floss every day. You don’t want to ruin those nice teeth!”
The refrain I’d heard at every appointment since I was a kid echoed in my head on the walk home. I had ruined my nice teeth. I couldn’t reverse that. (The fact I’d lost two teeth after being hit by a car a decade ago was beside the point – those weren’t my fault. But a cavity? That marked my mouth as the site of one more failure to be a functional adult.)
The shame quickly gave way to anger. Because it wasn’t my fault. I had neglected my oral health because the past year had consisted of a series of crises that I barely came out the other side of alive.
It started in June of 2023 (but it also started a very long time before that). I had a bout of bilateral anterior uveitis that was deemed to be autoimmune. Over the course of a few weeks, I started to have joint pain as well. I’ve had chronic pain for as long as I can remember but this was something different than what I was used to. Each month, the pain got worse. By November, I was struggling to open jars, turn on faucets, wear shoes, not wear shoes, stand, sit, sleep, wake up. I got a referral to a rheumatologist, who told me that without positive blood tests or x-rays or visible joint swelling, there was no evidence my symptoms were autoimmune. In April I told my family doctor I was frustrated because my pain wasn’t being taken seriously, and that clinical medicine needs a better way to contend with symptoms that aren’t reflected by what can be seen or measured. I told her I was struggling with activities of daily living and needed help. I said I was terrified because the last time doctors ignored my symptoms, I lost the ability to work or live independently for three years, and the next time that happens I will have nowhere to go but the street.
She replied that she liked to think she’d tried hard to accommodate me over the years, that she didn’t think it was fair to ignore the expertise that my doctors were bringing to the table in dismissing me, and that if medicine became something where doctors had to do whatever their patients tell them, she would have no interest in practicing it anymore. She told me that sometimes we need to accept injustice because there’s a reason for it, just like how we accept there’s a reason police are the only people who get to carry guns. I didn’t have “doctor equates clinical gaze with hegemonic application of deadly force /pos” on my 2024 bingo card, but hey, at least we were finally being honest with each other.
My PTSD and depression began to flare up in a big way.
Meanwhile, my apartment building – a cheap, poorly-maintained place that I had moved into when I was on ODSP and never moved out of once I started working full-time who can afford to move these days? – was becoming increasingly unliveable. The landlord kept cutting back on staff hours and maintenance services. There were regular fire alarms, sometimes multiple times a week, and occasionally actual fires in the middle of the night. There were always bags of garbage, blood spatters, and pools of urine and vomit in the common areas. From November to May, I woke up every day with a migraine that wouldn’t respond to my usual rescue meds, because all the units shared ventilation, so I was constantly breathing in other people’s secondhand smoke, plug-in air fresheners and roach bombs. My neighbours, desperate to believe there was something more than luck separating them from the city’s growing unhoused population, and mistaking my exhausted silence for agreement, took to monologuing at me about how the homeless were ruining society with their lifestyle choices and should all be put to work on chain gangs. I began to experience shutdowns every time I had to leave my apartment.
In January, my entire team at work was laid off. Despite burning through my savings during three months of unemployment, I moved into a new apartment at the start of June. With in-unit laundry, a dishwasher, air conditioning, and hallways that didn’t reek of bodily fluids, it was much more accessible for someone with chronic pain. It was also twice as expensive, and subject to rent control.
For a month, I ferried boxes and furniture between my old apartment and my new one, playing Tetris with the interior of my Fiat 500. I’m not in contact with my family and I have no friends living nearby, so I had no one to help me move. I hired a mover for the really big stuff, but I was broke and couldn’t afford to book them for more than a few hours.
Just before my move, someone broke the door handle on my car, trying to break in. That cost $400 to fix. Halfway through the month, I broke the two dental implants I’d gotten after being hit by that car. The cheapest option, having the teeth removed and getting a denture, cost $1000. Then my laptop broke. That didn’t cost anything because my best friend got me a replacement, but it sure didn’t help my stress levels. Then someone broke my car window, trying to break in again. That cost $500. Then I had the broken implants removed and I got a bone graft just in case I can ever afford to get the implants replaced. That cost $600. And then – because I definitely do not have an undiagnosed autoimmune disorder, because my blood tests and imaging are always normal and I’m just a hypochondriac control freak who wants doctors to do whatever I command them – my immune system started rejecting the bone graft, and I spent a week in bed. I couldn’t function. I could barely sleep, and I couldn’t concentrate on anything other than crying, taking prednisone, and putting ice and lidocaine gel on my face.
The cumulative effect of all that pain, stress and re-traumatization was the most profound period of autistic burnout I’ve ever experienced. My brain just stopped. I found myself sitting in silence for hours at a time because I needed to go to the bathroom but couldn’t actually make myself get up and walk there. I scrolled webpages and Reddit threads looking for advice on how to recover from burnout.
They all emphasized that the most important thing is to rest and remove stress from your life. Have your family and friends take over basic day to day tasks like cooking and cleaning. Take a leave of absence from work. You may think you can’t afford to take time off, but you’ll only make things worse if you keep trying to push through.
I half-considered checking myself in to the psych ward but I knew that wasn’t really an option. I had no one to take care of my dogs. I knew from experience that they would deny me access to the meds I need to physically function, and that they wouldn’t provide allergy-safe foods or bath products. I also knew that they probably wouldn’t take me seriously anyway, because years of abuse and autistic masking mean that I reflexively mirror the facial expressions, body language and vocal tone of whomever I’m talking to. It’s a skill that comes in very handy for customer service and public speaking, and is profoundly destructive when it comes to convincing people you need help.
So I just kept going. I existed as much as I could and spent all the executive function and energy I had on basic survival tasks and making sure my dogs’ needs were met. Needless to say, brushing and flossing didn’t always make the cut.
It really wasn’t my fault I’d gotten a cavity. And as I thought through all the reasons why it wasn’t my fault, the anger gave way to despair. I’m never going to be able to take care of myself the way I’m supposed to. I will never have enough time. And no matter how many things I let fall by the wayside to buy myself more time, I will still always be tired and in pain.
Just as I’d thought I was coming out of the burnout, I spent another week unable to function. This time I wasn’t in physical pain, but I couldn’t focus on anything except for how impossible the arithmetic of self-care is when you’re chronically ill and alone in the world.
When you’re chronically ill, you literally have less time than people who are chronically well. But in spite of this, you’re supposed to do all the same things they do to keep their bodies functioning. Not only that, you’re supposed to add a bunch of other things specific to keeping your body functioning. But you’re also supposed to make sure to set aside time for rest. You have to listen to your body and practice pacing and energy management. And don’t forget to stay on top of your mental health and stress levels, because stress is only going to make your pain worse. Oh, and you’re also going to have to work full-time, because self-care is pretty hard without food and housing and medication, and disability benefits don’t even cover rent anymore.
And if you fail at any of those things, keep in mind that it’s your fault your symptoms aren’t being controlled, because you’re not complying with the best available evidence for how to manage them. Why are you so fixated on getting your doctor to write a script for you when you could just try keeping your apartment clean and exercising every day and resting when you need to and eating clean and meditating and going to therapy? And while we’re at it, why aren’t you making an effort to socialize? You’re probably in pain because you’re stressed out and depressed. Did you know there’s high-quality evidence that shows loneliness will literally kill you? If you made more of an effort to make connections with people, maybe everything wouldn’t be so hard for you all the time. You have to learn how to ask for help. (While we’re at it, are you absolutely sure you don’t want anyone on file as your emergency contact? Like anyone? Yikes.)
So what does all this have to do with how we think about social determinants of health? Is it that I’m only able to theorize when complaining about what’s going wrong with my life? Possibly. Should I talk to a therapist about that instead of trauma-dumping in a blog post? Probably. But we’re in a cost-of-living crisis so you’re just going to have to indulge me.
In all seriousness though, I think there is value in sharing these experiences and not just because I’m desperate to feel heard, for once, about the fact that you cannot self-advocate your way into making people care enough about you to help, or self-manage your way out of chronic illness when you are already struggling to get by.
Increasingly, acknowledging social determinants of health is becoming a baseline expectation in research and policy spaces. There is a proliferation of initiatives examining how sex and gender affect people’s experiences of health and healthcare. There are similar efforts to examine socioeconomic barriers to health and healthcare within projects and publications. It is generally well-accepted that people living in poverty and in rural and remote areas have worse health outcomes that are tied not only to poorer healthcare access, but to things like food deserts and inability to afford costly health supports and interventions. The same can be said again for racial and ethnic identities; there is a widespread and growing recognition that Indigenous and other racialized people have poorer outcomes (although there is still a tendency to resist naming the reason for these outcomes, which is not merely ‘race’ but rather, systemic and medical racism).
But we acknowledge social determinants of health in abstract and general terms. They are not things that we and our colleagues and organizations participate in. They are not active choices made by practitioners who are nice right up until the moment you tell them niceness isn’t enough and then they tell you that injustice is justified as long as they’re being empowered by it. They are not violent. They just are.
Sometimes we try to mobilize knowledge about them. There is the hope that if people – clinicians and patients alike – know better, then they will do better. But we don’t really interrogate what it means to mobilize knowledge in a system where certain kinds of knowledge are considered more valid than others, where some people actively choose injustice, and where people who mean well lack the skills and resources to do anything about inequity when they see it.
Sometimes, we examine how health interventions are more or less effective or available for equity-deserving populations, and hopefully if the next phase of the project gets funded, we can look at adapting those interventions so they work better for more people (maybe). We may even create interventions that target some of the downstream effects of social determinants, albeit in a highly individualistic way.
The new trend for social prescribing is an example of this latter approach. It seeks to address the correlation of social isolation and loneliness with adverse health outcomes by straightforwardly connecting people with opportunities to be social in their communities. It does not seek to address the upstream factors that often contribute to entrenched isolation and make straightforward socializing inaccessible, such as poverty, disability and abuse. Nor does it offer remedies for the diverse material consequences of being isolated in our particular society, with its particular approach to welfare and community-based care services.
Health research rarely acknowledges the individual health outcomes of structural injustices. And at the same time, when faced with structural injustice the only solutions it offers are ones that put the onus back on the individual to fix themself.
We don’t try to change the ways that social determinants of health actually determine health. We don’t create programs to make sure isolated people have someone to drive them home from an outpatient procedure or help them pick up groceries when they get sick or make sure their pets don’t starve if they die in their apartment. We don’t design services that connect chronically ill people with someone who will help them cook and clean, so they occasionally have the time and energy to brush their teeth and do their physio exercises and maybe stop wasting all that money on unhealthy takeout food. We don’t devise interventions that seek to improve the air quality in people’s low-income apartments. We don’t create solutions that give racialized people and gender minorities recourse when their pain is underdiagnosed and undertreated.
I’m so tired and so angry. I’m angry that I spend so much time in well-meaning discussions about how to improve health equity and I never see it playing out in any real way in my day-to-day life as a chronically ill, neurodivergent, mad, queer abuse survivor. I’m angry that I’m doing work I’ve dreamed of having the opportunity to do for years – as an advocate and health service designer – and I find myself wondering if it will ever make a real difference. I’m angry that I feel myself toning down my anger because I don’t want to overwhelm people who are trying to make things better even without lived experience. I’m angry that I’m worried people will check out of reading this post halfway through because it’s nothing but a lot of anger.
I’m angry that I’m lucky. In the end, I am still here. I have an accessible apartment I can (sort of) afford. I can pay for my meds. I don’t have to skip meals. I have people who love and support me even though they live far away. I have dogs who lie on top of me when I’m crying and pick shorter routes to walk when they can tell I’m in more pain than usual. I work with people who are sincerely trying to make the world better and who give me grace to be slow when I need to be. There are so many people who are struggling more than I am – and so many for whom the struggle got to be too much.
I guess, in the end, I’m doing exactly what I just criticized. I’m trying to mobilize knowledge about social determinants of health, without offering solutions. But still, it feels important to me for some reason.
Maybe it’s the fact that when I talk to awesome, critical, justice-oriented people about my experiences with our healthcare system they are usually surprised by how profoundly care has been unavailable to me, and when I talk about the things I am struggling with, they are always convinced there is at least one social service or mutual aid organization out there willing and able to help me, and the problem is that I just haven’t found or reached out to them yet.
The way we talk about health inequities so broadly and abstractly seems to make it harder, not easier, to acknowledge what it looks like when these factors come to bear on a person. And the result is that when we see them playing out on an individual scale, we attribute what we are seeing to individual causes: lack of motivation, lack of knowledge, learned helplessness, hyper-independence, failure to self-advocate effectively.
I want health research to begin intervening in social determinants of health. And I have ideas for how we can support that kind of shift. But for now, as a first step, I’d like researchers (and policymakers and care providers and the public) to practice thinking about what social determinants of health actually do within a person’s life. When you observe someone making a harmful lifestyle choice or failing to make a good lifestyle choice, take some time to reflect on the possibility that this may be the only choice they can make in order to continue functioning and surviving. Don’t let yourself off the hook by acknowledging that it may be the ‘best’ or the ‘easiest’ choice because then we’re right back into ‘lack of motivation’ and ‘learned helplessness’ territory. Really think about the set of circumstances that would constrain a person so much that the only choices they have are bad ones. Think about the supports it would take to lift them out of those circumstances. Spend some time looking to see if those supports exist, and if they do, how they are formally and informally gatekept. Give yourself some time to feel angry, depressed and powerless.
Then get angry.
And then start thinking about how to do the work.
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