Living on the Intersection of chronic illness & fatness
Elevators stress me out.
Not because once, my siblings and I were stuck in an elevator for a few hours – thirsty, hungry, and scared that our parents would be mad that we were late coming home… and not because of the time when I accidentally peed my pants in a crowded elevator (8 was a rough age for me and elevators).
Elevators stress me out, because almost every time I decide to use (or not use) an elevator – it is after an intense, and fierce internal conflict.
You see – I have Lupus.
Lupus is a chronic autoimmune disease, and also what’s known as an ‘invisible illness’. What this means is – most of my symptoms are not visible or noticeable to others – so people don’t know that I am sick.
Normally, this is fine. People can get kind of weird when you tell them you’re sick – sometimes it even changes how they look at or relate with you. I’m privileged enough not to be visibly ‘othered’ due to my illness, and I know that for many people this is not the case.
However – when you look able-bodied, and healthy* (*ish… we’ll get to this) – people make assumptions about you, your body, and what you can do. Most of the time, it’s manageable – but sometimes it’s not.
Lupus presents itself in different ways in different people. My Lupus mostly presents itself as chronic pain, and chronic fatigue.
Some days, I’m fine – but other days, it hurts to get out of bed, to stay in bed – to just exist. Some days I can run down the stairs, or dance in front of my bathroom mirror – but other days, I can’t use my aching and stiff fingers to untwist the cap off my water bottle, or button up my clothes. Some days I can do 200 squats before bed. Some days I can’t bend my knees enough to walk down the stairs. Some days, I don’t have the energy to lift my arms long enough to tie my hair up, or shampoo it. Some days even lifting my phone up to text feels exhausting.
It’s like my body is this unknowable thing – a current, and I don’t know where it’s going to take me, and what’s going to happen next… When I say it like that, it sounds fun! Like an adventure! But really, it’s often terrifying.
Feeling like you don’t have control over your body is truly awful. You can’t really plan ahead, because you never know how you’re going to feel. You can’t buy Janelle Monáe tickets because it’s GA only, and you don’t know if you’ll be able to stand the whole time. Or if you do decide to go somewhere where you have to stand the whole time, you can’t plan ahead to know whether or not you’re going to be having a flare up, and be in pain the whole time – no matter how many NSAIDs you take. To get anywhere – to do anything, you have to try to see and plan for every possible outcome (without an Infinity Stone!) – and it’s exhausting.
Luckily, my medication really helps me deal with my symptoms, and thankfully, my symptoms are a lot less severe than others I know, who also have Lupus. But I still live with chronic fatigue. And I still struggle with chronic pain.
You would think that because of this – and despite my illness not being visible – I would not hesitate to do things that make life easier for me. Like… sitting down while everybody else is standing. Or asking the people I’m walking with to slow down… Or taking the elevator.
But here’s the thing, I’m also Fat.
And when a fat person steps into an elevator, and selects the 2nd floor – people roll their eyes, or sigh in exasperation, or sometimes even say “seriously?” Out loud – like I’ve gone through the effort (& this humiliation) all in order to trick them – or inconvenience them.
When a (young) fat person sits in a packed bus, or train – you see a whole new level of side-eye and glaring.
Even walking with friends presents its own challenges. Short legs aside, I can’t always keep up with with people when they’re walking quickly. I have frequent hip pain, and knee pain, and walking – especially walking quickly, can be exhausting and painful. But if I ask people to slow down – the assumption is it’s because I’m fat.
I’ve been trying to come to terms with my body – its strengths and its limitations – for years. And sometimes I feel great – I feel at peace with my body, and I am kind and soft with myself.
But sometimes I’m angry.
You see, it’s not just about elevators, it’s about my place in this world.
This world was not designed for me – or people like me. The whole concept of accessibility is built on the premise that the world wasn’t built for me, and I have to be accommodated to get the same kinds of experiences — or quality of life — as others.
I’ve internalized SO MUCH anti-fat sentiment that I agonize over asking for the slightest accommodation.
However, even if I didn’t also have Lupus – fat people often need accommodations too… and that’s okay! Sometimes you need wider seats, or shorter chairs, or elevator access – almost everyone needs accommodations sometimes – but somehow, fat people are the most vilified.
It’s more than just the occasional dirty look, exasperated sigh, or rude comment; fatphobia and anti-fat attitudes and behaviours are not just prevalent, but they’re normalized – and even encouraged.
Recently, I was at a professional workshop for women, about self-esteem and how it relates to us in the workplace. The woman facilitating the workshop did this professionally, and had led dozens of workshops about topics like Women in Leadership, confidence, and self-esteem.
She started talking about ways to increase, and maintain a healthy self-esteem. She mentioned things like getting enough sleep, meditation, making decisions, and exercise.
While she was talking about exercise, she started discussing weight, & how being overweight can lead to increased risk of heart disease, depression, anxiety, and more. (All valid information!)
However, while she was talking about the benefits of exercise on your self-esteem (better health, release of oxytocin and other hormones that lift your mood, meditation, etc.) she brought up obesity, and mentioned how she was just in the US.
Immediately, the whole room – which was full of mostly skinny, or ‘normal’ sized people – changed. From having thoughtful discussions about confidence and self-esteem, to smirks, chuckles, groans and jokes – the shift was noticeable.
The facilitator mentioned that she had recently been in an airport in North Carolina – and a woman (who is in senior management) jumped in to say that [being in North Carolina] “means big portions”. The entire room was laughing, mocking, shaming, and acting disgusted. The facilitator, jumping into the discussion, fervently started talking about how she couldn’t believe the size of these people – “seriously”, wondering about how they could even fit on a plane.
………. I mentioned this was a professional workshop about self esteem, hosted by a large corporation, right?
The worst part was that none of them seemed to realize that what they were saying, and how they were acting had the potential to be hurtful. This was an accepted part of the workshop, even after lessons about the importance of not being hard on ourselves, and discussing all the benefits of having a good, healthy sense of self-esteem.
Fat-phobia, frequently disguised as concern – is so incredibly pervasive in every day society (in MANY cultures). From “well-meaning” and incredibly intrusive questions from people who barely know you, to making inappropriate comments; fat people are regularly dehumanized, ridiculed, mocked, and shamed.
I’ve internalized so much fatphobia – and fear of fatphobia – that I stop myself for asking for accommodations I need. And that is not okay!
There are SO many factors that go into being fat: Poverty, genetics, access to food, access to healthcare, disability, illness, & lack of education. Yet, somehow, fatness, weight gain, and obesity are always framed as personal, individual failings, both systemically and socially. Fatness and weight gain are blamed (the same as immigrants and poor people) for putting a strain on resources like healthcare.
Fatness and fat people are somehow so vilified that people find it perfectly acceptable to call out or shame fat people (even strangers!!) in the name of doing so “for their own good”.
Fat people are often refused service. Bullying of fat people (for their fatness) is not only accepted, but often done by teachers, parents, and people in positions of authority. Fat people are often charged more – whether that’s because plus sizes often cost more, or because airlines force fat people to buy two seats. Fat people are less likely to be hired, and if they are hired, they are more likely to be lower paid, and have fewer opportunities for promotion. All of this often occurring in workplace cultures that bully or shame fat people in small and systemic ways.
Fat people are also more likely to be disbelieved by doctors. Doctors have shorter appointments, and provide less emotional support to fat people.
Because I’m fat, it took so much longer for me to get a doctor to take me seriously, let alone get diagnosed with Lupus. For every complaint, every medical issue that I talked to my doctors about, I got an answer that it was because I was fat.
I hated going to the doctor, and I internalized so much of what other doctors had said – not taking my pain, or my body seriously, and attributing everything to my fatness. I stopped advocating for myself and my body, and started gaslighting myself. My ankle hurt? I must have twisted it, and forgotten about it. My knee consistently hurt every day, to the point that I couldn’t go down the stairs properly? Old rugby injury acting up; also probably because I’m fat. It took years of pain and second guessing myself to bring up my pain to a doctor again, and even then, I only brought up the pain & swelling in my fingers & knuckles, because I was having a hard time attributing it to my weight.
I’m grateful that my doctor took me seriously enough to order a blood test. I’m grateful that the blood test was positive enough that my doctor wasn’t worried, but she referred me to a Rheaumatologist right away. I’m grateful that in the 5 month wait to see the Rheaumatologist, when I was in pain so bad that I had to get help putting on or taking off my backpack – I had a specialist shaped light at the end of the tunnel. I’m grateful that when I saw my Rheaumatologist, I happened to be in a flare up, and I was able to be diagnosed (after dozens of tests and scans). I’m grateful that I was finally believed, finally vindicated – but I know that is not the case for everyone.
When my sister started getting anxiety attacks, everyone – including our doctor at the time – attributed the chest pain and difficulty breathing to her weight. When my mom first started experiencing symptoms of carpal tunnel (pain and tingling in her arm), her doctor *somehow* attributed it to her weight. Now, women are way more likely to not be believed or taken seriously by their doctors than men, but my dad’s sleep apnea was attributed as trouble sleeping and trouble staying awake because of his weight.
In fact, I would argue, the entire medical industry has no idea how to deal with fat people. Spouting the same, outdated advice about dieting, disbelieving fat patients, often encouraging unhealthy behaviours, ignoring symptoms, and really contributing to low self-esteem, going to the doctor as a fat person can be an awful experience.
Fat people are bullied, shamed, fetishized, mocked, disbelieved, and belittled. Fat people are stereotyped as lazy, unattractive, and unintelligent. Fat people routinely have to deal with ‘helpful’ or just plain rude comments from strangers. Unwanted, and unasked for touches, prods and pokes from strangers, and loved ones alike; when you’re fat, people don’t respect your personal space, they don’t feel the need to.
You even hear stories of eating disorders being suggested, encouraged, and congratulated, when it comes to fat people.
I was 16 when I developed an eating disorder. Still young, and vibrant; Athletic, popular, and smart, I had an incredible community of friends and family who loved me. But still, when I looked at myself in the mirror, all I saw was an ugly, brown, fat girl.
When I saw extended family (or even family friends), no one hesitated to comment on my weight, whether I’ve gained weight, or lost it (this is still true). Only a couple of months after I started the vicious cycle of bingeing and purging, I still remember all of the compliments I received about losing weight after a trip to Pakistan – where I had diarrhea for nearly 2 weeks straight. I came back, still bulimic, still sick, and unsteady, and everyone was congratulating me. Even as I soaked in their praise – more praise than I got for my grades, for winning student elections, or for other accomplishments – I understood, that this was fucked up.
Now, almost 10 years later, in a lot of ways, I’ve begun to love and accept my body again. Although I live (& struggle) with my eating disorder every day, I am much more in control of it, and of myself. I still struggle sometimes, but I’ve learnt to be soft and kind with myself.
When I was diagnosed with Lupus, nearly four years ago, my relationship with my body was back to being very complicated… except now, instead of me hating my body, it felt like my body had betrayed me.
Now, every day feels like a tug of war between my fat self, and my sick self.
My sick self is tired all the time, often in pain, and often needing a break. My fat self is so scared of being labelled as fat and lazy, that I can’t bring myself to asking for, or taking the accommodations I need. Often preferring to suffer or wear myself out, than face some stranger’s ridicule or pointed comments.
Elevator rides are a minefield, especially when I’m with other people who are often disdainful of elevators, and either unaware of, or have forgotten about my invisible illness. Every single time I have to decide between taking the stairs, or pushing that elevator call button is an internal weighing (pun intended) of every single thing I am likely going to have to do that day (& maybe the next day), and whether I can spare the energy to walk up (or down) the stairs.
Every time I sit down on public transit, even if it’s almost empty, I can’t help but avoid eye contact with everyone else, anxious about what they will say about the fat girl that has to sit down for three streetcar stops.
Every day, I have to make little decisions about whether I am going to make things easier for myself. Every day, I try to be brave enough not to think about what others will say or think. Some days, I’m fine – I take the accommodations I need, and am unapologetic, and unhesitant about it. But still, on other days, I hold myself back with my deeply seated, internalized shame & fear of being shamed for being fat.
Although my relationship with my body is complicated, and I am often my own worst enemy, I am working hard to quash my own anxieties and shame, to advocate for myself, and to take the damn elevator when I need to.