When I was diagnosed with a chronic illness and an eating disorder, I couldn’t help but wonder if the treatment she received would have been different if I wasn’t fat. Now a fat activist, writer and speaker, I have learnt to reclaim the word fat as an empowering and important term – but it’s clear more needs to be done surrounding weight stigma in the wider community.
I’ve experienced chronic back pain on and off for years, but never anything that wouldn’t right itself after some physio and a prescription to lose some weight and exercise more. My relentless, ongoing, never-to-give-me-a-break-again chronic pain experience started in 2016.
I’d had an infected abscess on my chest that required surgery to remove. The next 6-8 weeks were spent driving back and forth to the doctor every day to have my dressing changed. I was exhausted, my wound wasn’t healing and no matter how much sleep I got, or how many vitamins I was taking, my body just wasn’t healing and I wasn’t getting any better.
I saw specialist after specialist, had test after test, and yet results were all coming back inconclusive. And yet the only common thread that tied all of these together, was the advice that if I lost weight, if I ate better, if I exercised more, my pain would disappear.
When I finally landed in the hands of the ‘right’ specialist, rheumatology, I was attending the clinic at the same hospital where I had also attended for treatment for my eating disorder years earlier.
My rheumatology file only had a couple of papers filed in it thus far, but the same manilla folder also contained my extensive eating disorder notes, at least a few inches thick. Now, the irony was not lost on me as I sat in an appointment with a rheumatology registrar, with whom I had discussed my history of an eating disorder, and they proceeded to hand me a plan consisting of step counts, exercise and ‘healthy’ eating. They too decided that I must lose weight, and that somehow weight loss would be my magic cure.
It left me wondering what they tell folks whose bodies aren’t as big as mine. Would they tell somebody half my size that they also needed to lose weight, and that their excruciating pain would disappear if they did? I want to know what treatment they were given.
Fatphobia and eating disorders.
The thing is, when you’re fat*, medical trauma exists, and it rears its head every time you have to attend appointments. I can’t even begin to articulate the feeling and experience of attending a doctor’s appointment for a common cold and leaving with information about diets and bariatric surgery.
You feel completely dehumanised. For once in my life, I wanted to walk through the doctor’s door and not be looked at like I was a liability. Just once I wanted to walk into an appointment with my GP and her not ask me to step on the scales. Just once I wanted to walk through the doors of my doctor’s office and feel respected, believed and treated like a human being.
I’d gone back into eating disorder day program treatment whilst in the process of receiving a diagnosis. I came out of that admission feeling worse than when I went in. The level of fatphobia was unbelievable, and in an attempt to raise these concerns with staff, I was labelled as non-compliant.
On weigh days, the gown I was given to change into barely covered my body. I felt humiliated, exposed, dehumanised and so incredibly ashamed. This is the issue with fatphobia and its presence in eating disorder treatment, it’s there, and it’s incredibly damaging, but nobody really wants to do anything about it. And those that do are already exhausted from having to constantly try to defend our humanity.
Fatphobia in eating disorder treatment is so enmeshed in the landscape. Every time something fatphobic is said, or done, a system of harm is upheld and those who are harmed the most are those whose bodies come under constant scrutiny, policing and surveillance.
When you’re fat, it’s like other people claim ownership of your body, because, based solely on the way that you look, you are deemed absolutely incapable of ‘looking after yourself.’
While I was back and forth to the doctor and my therapist during the diagnostic process, there were many times where I was told that my pain was due to my ongoing mental health issues. I was constantly told that I was in pain because I was depressed, and it was my depression that needed to be treated.
We’d try managing my pain, but it was the bare minimum in terms of relief. I’d attend appointment after appointment with both my GP and psychologist at the time and I was desperate for somebody to take me seriously.
My pain was dismissed, and because I was going back week after week in tears, essentially pleading for some relief, I was seen as non-compliant, and was essentially told that I needed to be in hospital due to my declining mental health. I now know that my mental health wasn’t declining; I just wasn’t being listened to. My mental health was not in crisis; I now know that I was being gaslighted, and that wasn’t OK. I know my body, and I know when something isn’t right.
But when you’re fat, with a history of depression, anxiety and an eating disorder, it seemed my intrinsic knowledge of my own body couldn’t be trusted or believed.
Grieving my own body and learning to accept myself.
My relationship with my body has changed over the years.
In 2017, I was diagnosed with fibromyalgia, which is a chronic illness that is characterised by widespread musculoskeletal pain, memory issues, chronic fatigue, IBS, sleep disturbances, and it can really impact your mood. It’s been said that fibromyalgia affects the way the brain and the nervous system process pain signals.
Essentially, my brain tells my body that it’s in pain, and vice versa. The thing about fibro though, is that it is a diagnosis of elimination, meaning that all other avenues have to have been ruled out before a diagnosis can be reached. When you’re in excruciating pain on a daily basis, this hardly seems fair. Needless to say that receiving a diagnosis is a lengthy and arduous process.
At times I’ve felt like fibromyalgia is some big, cruel joke; you spend a period of your life being at war with your body because an eating disorder disconnects you from so much. I’ve felt like I’ve betrayed my body for so many years through my eating disorder, and now fibromyalgia is my body’s way of betraying me.
There’s grief, for all the years I lost through my eating disorder, and coming to terms with the fact that my body simply cannot do the things it used to do.
In a lot of ways, I’m restricted in my body’s capacity – I get tired easily, my body can’t regulate its own temperature, my pain increases exponentially if I do too much in a day, my sleep can be disrupted, I’m sensitive to light, temperature and sounds. I’ve had to grieve the loss of what was and come to terms with what is. I function at a level of pain that would floor most people, because I have to. I’ve learned what I’m capable of on any given day.
I think that there’s this misconception that when you reach a certain point in recovery you will never have another thought about your body.
For me, at least, my relationship with my body is mostly positive; I’ve worked incredibly hard to get to this point, but I’d be lying if I said that I didn’t long for the days where my body was able to do certain things, and where I was functioning in a body that others don’t deem abhorrent and unruly. While full recovery is possible for some, for myself, I’ll always be in recovery from an eating disorder. I will always have fibromyalgia.
I’ve had to learn to accept what my body can and can’t do, and I’ve really had to wrestle with a lot of self blame – my fat body was not to blame for my fibro or my eating disorder.
Nothing I did or didn’t do was to blame for my chronic illness. Some days I’ll feel at ease in my body and some days I won’t. Some days my pain levels will be tolerable, and some days they won’t. What I’ve taken away from this experience thus far is that:
1. Grieving for my former self is important.
2. Allowing my body to rest when I need to is vital for my functioning.
3. Sometimes I’ll need to cancel plans at the last minute because my body just won’t allow me to push any further.
4. I don’t need to feel guilty for saying no to plans.
5. Sometimes I’ll need to ask for help.
6. I don’t have to suffer through excruciating and intolerable pain; pain deserves to be treated and I deserve to be believed.
7. Gaslighting is never OK; I’m allowed to disagree with my treatment team, and search for different treatment options that understand and believe my situation.
8. I am the expert of my own body.
9. My eating disorder was no less serious just because I was fat.
10. I am not to blame.
11. My fat body is worthy.
I’m thankful now that I work with a team of professionals who believe me. They work from a health at every size perspective, and honour my knowledge and trust in my own body. This was such an important aspect in my healing, and reclaiming ownership of my body.
I wouldn’t say that any of this has been easy. A lot of the work around body acceptance, finding my voice among the messiness and coming to a place of functioning with fibro I have had to do myself. Reclaiming the word fat has been one of the most liberating experiences in all of this.
Make fat empowering.
Fat is a word that has held, and continues to hold so much stigma. We equate fat with bad and fat with lazy, and fat with unworthy whether we like it or not. This is the way society has shaped our beliefs. For me, fat had always been a word that was so fraught with fear. I grew up being afraid of fat which manifested in being afraid of my ow body. Fat was always a word that was hurled in my direction, but it was cloaked in shame and dripping in insults.
I can’t tell you exactly how I reclaimed the word; it wasn’t something I set out to do. It really just happened.
It was the seemingly innocuous things I was doing that really elevated me to a point where calling myself fat was a liberatory event rather than a form of punishment and degradation. I decided that I would no longer apologise for taking up space. I had to change my relationship with fat.
I went through my social media spaces and I blocked, unfollowed and reported every person or post that made me feel like I wasn’t worthy. I followed people whose bodies looked like mine. I followed people whose bodies didn’t look like mine.
I had to keep repeating to myself, “there is nothing wrong with my body,” over and over again.
I invited the shame, sadness, anger and grief to just be, as they were. I offered myself compassion.
I refused to allow my body to be the site of everybody else’s fear, disgust and beliefs about fat bodies. I took photos of my body in my underwear. I went to therapy. I cried. I approached my experience with curiosity. I found my voice on social media where I share my experience. I journaled and I wrote. And I kept on going when things felt impossible.
It happened gradually, then suddenly. My relationship and my proximity to the word fat changed –the truth is, I am a fat woman with mental illness and fibromyalgia. And I am so proud of where I stand today. * This article uses the word fat to describe my body. I am objectively fat, and it is a term that I have fought so hard to reclaim over the years, it’s now become a benign, neutral descriptor of my body. Using the word fat is empowering and important to me.
Please note that this article was initially written for Butterfly Foundation. You can find the link to the original article here.