Chronically Ill Kat

I recently asked my good friend Alicia Shearsby to write about her experience of being fat and disabled. I remember very clearly the first time I was confronted with the different treatment that fat and thin people get when Alicia and I went to the doctors together. We were travelling and both had the same issue, very infected mosquito bites, when I went in I was given antibiotics, when she went in they talked about diabetes. I’m not sure she was given antibiotics.

Anyway please check out this brilliantly written article and if you want more from Alicia you can find her instagram here, and her amazing etsy shop and instagram here. At the moment she is fundraising for an electric wheelchair as she really needs one and they are hyper expensive even second hand, so if you have the money then you can donate here, if not sharing the link is also incredibly helpful.

I don’t know anyone who enjoys doctors appointments: the prodding, poking and invasive personal questions. I know many people who dread them or, if they’re lucky, manage to avoid going to the doctors for years at a time. I’m not sure if there’s anything I dread more, and as a twenty-five-year-old disabled woman I’ve been to a fair few. It’s not necessarily the needles, blood pressure bands or reels of intimate personal history (which I’m required to have memorised and have ready to produce at the drop of a hat) that harms me the most though. It is the ingrained fatphobia within the medical establishment – when societal ideas of what it means to be fat enter the office with me, and proceed to influence the doctor that I’m seeing. That is what I find most damaging.

I’ve seen a post making its rounds on social media, within the disability and chronic illness community, which I relate to a lot. It explains how going to the doctors with a chronic illness is like watching your house on fire and having to decide which is the most important part to put out. It says:

“Going to the doctor when you’re chronically ill is weird. It’s like, imagine everything in your house is on fire, and you’re standing there, and the fire department come in like ‘describe the fire to me and maybe we can find what caused it and put it out.’ And you can’t just say everything so you’re like… ‘Well, the fire in the curtain is the biggest, but the fire in the photo albums might be doing the most damage. Also, the fire in the couch is really inconvenient.’ Occasionally the fire guy is like, ‘Well your tv is on fire so it might be electronic-fireitus, but that would cause other things like fire in the dvd player.’ And you’re like, “oh yes, that’s been on fire for years. I forgot to mention it because it’s always been a relatively small fire. It’s right next to the bookshelf which has much more fire.” And then the fire guy is like, “Oh. I wouldn’t worry about that. Bookshelf fire just happens sometimes.”

While this is often my experience with explaining symptoms to doctors, there is one key difference. According to the doctor the ‘fire’ is almost always caused by being fat. And despite the various attempts I make to explain that, actually, weight isn’t an ‘issue’ I want to talk about at the moment, and yes in fact I came here to talk about the ‘fire’ in my fingers, it still seems to be all I am to them: a fat body that needs to be thin.

I clearly remember my first, post-18 doctors appointment. I went in to talk about my mental health (including disordered eating) and came out with antidepressants and a 10-week subscription to Slimming World. I was told that I couldn’t be expected to feel good in my mind if I didn’t feel good in my body and was so embarrassed that I didn’t tell anyone what had happened. I dutifully went along to the sessions and followed the plans and was disappointed when the doctors’ attempt at a quick fix didn’t work.

Since that initial appointment, over seven years ago now, I am yet to go to a doctors appointment where my weight isn’t mentioned in some way. I have not once gone to talk about weight, and yet have been referred to multiple weight loss programs and even prescribed dangerous, weight-loss medication which my gut is yet to recover from. Since being diagnosed with a hormonal imbalance that makes weight loss near impossible, I thought I might get some respite, and that my weight would become a background interest and not a main focus for doctors. Alas, in the very same appointment I was referred to two more programs.

While I know that weight does play a factor in overall health, it is not the be all and end all. There are healthy fat people and unhealthy thin people. Weight is not the cause of all possible problems and illnesses, as the doctors I’ve seen make it out to be. The association with weight and health is a fairly recent one that stems from racist roots and misused analytical tools. (Please take some time to research the history of fatphobia and the BMI scale since that deserves a whole article by itself and I could not do it justice here!) Fatphobia, hence, became a tool of othering, separation and discrimination.

Medical fatphobia from doctors and professionals is not the only way that fatness affects me as a disabled woman. One other topic I would like to briefly touch on is mobility aids. When I first realised that using a wheelchair would greatly benefit my wellbeing, I posted in a local facebook group asking if anyone had one spare and, luckily, they did and kindly offered it to me for free! It was a standard, manual wheelchair, which was honestly a godsend, and for the first time in a long time, with the help of friends, I was able to gain back some freedom: I could go to the shops and pick out what I wanted to eat, in person; I could go to my local park and woods; and even managed a few day trips further afield, before lockdown was enforced.

What became clear very quickly, however, was that this chair was not made with my body in mind. First of all, the seat was too narrow, and it was uncomfortable having to squeeze into the seat, especially for long periods of time. Eventually, the discomfort turned into actual damage – to me and the chair – as the wheels rubbed holes through the leg guards, grazing against my legs and eventually leading to the wheel falling off. Additionally, it was extremely hard work for anyone to push me in the chair, since we did not have any motorised assistance. After the wheel fell off, I decided it was time to look into what else was out there for me in terms of an electric wheelchair. Turns out the answer is, not very much at all.

After an initial research session, I was excited to see all the different chair varieties, especially the number of chairs designed specifically for off-road or outdoor use (I’m a country bumpkin at heart). Putting the price aside, a whole other conversation we need to be having, things were looking promising. I picked out a few that looked perfect and brought up their specifications. Disappointment hit, as I was greeted with the same information again and again: ‘max user weight x, max user weight x, max user weight x’. I was naive in thinking that because I was seeking to buy a literal mobility aid that they would be accessible for fat folks. Turns out that’s a big nope. Where I did fit into the accepted weight limit, I found that the seat width was just the same if not smaller than that of my previous chair. I’m yet to find a solution, other than have a custom chair made for my needs, which I can’t afford. What I can’t fathom is why, in the 21st century, with all the new and upcoming technology, finding a wheelchair for a fat body is a problem. It’s not like we are a rare kind of people; we have always existed and always will exist. But, again and again, our needs are ignored by the wheelchair manufacturers, by the doctors and by the wider community.

While I continue my search for a wheelchair that will work for my fat disabled body, I implore you to listen to our needs. To try to understand the complexities of having a fat disabled body in a world that assumes one size fits all and where weight loss programs are the go-to for doctors of fat patients, regardless of what they came in to talk about.

Thank you for taking the time to read this post. Fatphobia and disability is a very broad topic and, while I seek to educate and engage, I am aware that I have not covered the experiences of many people other than myself. Please feel free to continue the discussion in the comments.

Thank you, Kat, for giving me this opportunity to guest write on your incredible blog!