You keep making me ill…

Body Positivity has crept into the public conversation. On the surface it seems body diversity is gaining ground. We see larger models in ad campaigns. The high street is beginning to pay a little more attention to fat customers. Social Media is awash with bopo content. However, if you scratch the surface virulent fat phobia still thrives. Any progress is good, but the dangerous aspects of weight stigma remains strong. Medical bias against fat bodies wreaks havoc. As a chronically ill fat woman I frequently face this issue. In ten years of battling illness and the medical community, I have seen little improvement.

When I began having health issues, I accepted the consensus that was fat was bad and thin was good. I was in the process of some seriously unhealthy dieting when I initially experienced quite serious gastric pain. There were other symptoms, vomiting & difficulty eating, but pain was the standout. I progressed from short bursts to hour long stints of excruciating pain. My GP said it was most likely indigestion and/or heart burn. They could be surprisingly painful, I was told. Change my diet, lose some weight and things will improve. I tightened up my already drastic diet and continued to lose weight. My symptoms did not improve. In fact, they worsened. I began to have prolonged periods of pain. It would last for days at a time, leaving me unable to eat or move or sleep. It felt torturous. By this time, I was being sent to A&E by my GP and attending myself when the pain become unbearable. Drs continued to tell me it was heartburn/indigestion. They all said the same thing, change your diet and lose weight. I was prescribed omeprazole but had no investigation. No one listened when I told then I was hardly eating. No one cared that I was losing lots of weight. All the DR’s were dismissive of my pain. Most were patronising. Some were hostile. No one helped. This continued for over a year. On my penultimate visit to A&E I was in so much pain I could barely talk. I had thrown up so much that I was only bringing up bile & blood. I saw a deeply unpleasant man who vacillated between me being an hysterical woman and being convinced I was an addict seeking drugs. He gave me a cup of peptac (which I promptly threw up) and sent me home. I felt utterly beaten that night. I knew something was very wrong.There was no way I could feel this bad and there not be problem. But no one would listen. I was tired of being judged and looked down upon. I went home and cried.

Luckily, my mum visited me a few hours later. She was shocked when she saw the state I was in and insisted we return to A&E. With someone fighting (& I do mean fighting) fit to advocate for me I was finally taken seriously. A Dr finally ordered the simple blood test that would diagnose me with pancreatitis. By the time those bloods results came back my body had gone into shock. Had I not returned to the hospital that night I would have likely died. I spent 7 days in HDU. I was catheterised. Fed only fluids via drip and given a morphine pump. I don’t even recall that first week in hospital.

Afterwards I discovered that although I didn’t fit the usual profile for pancreatitis (often older men, big meat eaters, heavy drinkers), I did have classic symptoms. The pain I had been describing was textbook. The onset and progression of symptoms was exactly what was to be expected of pancreatitis. Had someone taken a minute to listen to me I could have been diagnosed on my first trip to A&E. I really believe if I hadn’t been a fat woman, that’s probably what would have happened.

I had several more bouts of pancreatitis and a number of gallbladder issues were diagnosed in the subsequent months. Ironically, I was to discover that my weight was not the problem. The most likely culprit was spending my 20’s yo-yo dieting. The fad dieting & resultant weight loss that Dr’s had always encouraged made me ill.

Almost dying because medical professionals wouldn’t look past the size of my belly wasn’t horror enough, I have also since been diagnosed with fibromyalgia. A condition I did not suffer from before all the trouble with my pancreas. Pain specialists have told me that the physical and emotional trauma of such a prolonged period of undiagnosed severe illness is likely to have caused the fibro. So, I not only had to suffer multiple times with acute pancreatitis, I will now deal with chronic pain for the rest of my life. I wonder how different my story would if I were a size 10.

Near death experiences aside, almost every medical interaction I have involves some discussion about my weight. With multiple chronic conditions I am a complicated case. Every new symptom no matter how unconnected involves answering questions and listening to lectures about how fat I am. I must push for investigations & interventions because the first advice is always ‘lose weight’. Often, I must identify possible problems via my own research. You would be shocked at the number of times professionals have dismissed my concerns only for my theory to be confirmed when they finally do the necessary tests. I have my cholesterol, blood sugar and pressure tested an inordinate number of times and am usually met with shock that they all measure within ideal levels. When I tell medical professionals that I do not wish to discuss weight loss, my request is usually ignored. Explaining that I endured years of disordered eating and misery related to trying to reduce my size has no impact. My mental wellbeing seems entirely unimportant. Even when I am brutally honest about the fact the I used to starve myself, purge & use appetite suppressants Dr’s still advise diet plans. When my eating was at its most disordered, I was never dangerously thin. So, I was never considered at risk. The sizest attitude towards eating disorders is a whole safety issue in itself. For the record I am vegan with digestive issues that limit my diet. It would be difficult for me substantially change what I eat even if I was inclined to. All this falls on deaf ears. Weight loss remains a priority for almost every Dr I see. When I have stomach flares and lose weight because I can’t eat, I am congratulated. When I am in hospital unable to stop vomiting nurses will joke, they wish they couldn’t eat for a while. It is relentless and exhausting.

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It really doesn’t have to be this way. Fat does not necessarily mean unhealthy. Even for those who would benefit from lifestyle changes will not be motivated by harsh judgement. The impact on mental health of all this fat shaming is enormous. We know that diets do not work. Most people regain all the weight they lose and more within a year. We also know that yo-yo dieting damages our bodies. Medical weight stigma makes people less inclined to seek medical advice. If you know you will be shamed and belittled and ultimately get no help anyway, you stop asking. This bias against fat patients is dangerous on so many levels. It’s a risk to our mental health, to our physical wellbeing and to our very lives.

* health-and-the-fat-girl.tumblr.com

Now everything’s cool as long as we’re getting thinner…

I had thought that the world being turned upside down might put a dent in diet culture. It seemed that having a real and very serious health issue to contend with would get our collective perspective in order. Turns out that was naive.

If anything, it’s worse. The fat phobia has amplified. It’s coming from new & unexpected directions along with all the regular ones. It’s demoralising to realise how quickly all those supposed body positive allies throw the fatties under the bus. People I respected didn’t take long to start posting the weight gain jokes. Support for my own & other fat activist’s work has begun to feel like a part of a cultivated image. One that cracks under any pressure at all.

When you joke about the horror of gaining weight in public forums it isn’t harmless. Not only does it perpetuate stigma towards fat bodies; you’re also telling fat people what you really think of them. If you like your smaller body I’m delighted for you. Enjoy it. However, if your only response to inhabiting a slightly larger form is mockery or revulsion, you are not a Bopo ally.

This applies even more in the current crisis. During a deadly pandemic that grinds entire countries to a halt there are many things to fear. If top of your list is weight gain you might want to reassess your priorities. I am the after picture in those hilarious memes. Looking like me is not the worst thing that corona virus could do to you.

Barber before & after quarantine meme

When I’m not disappointed by folk I expected better from I am bombarded by the diet industry. The weight loss world has never missed an exploitation opportunity. Diet plans & work out programme ads have multiplied. Disreputable influencers can’t wait to wring some cash of out skinny whatever collaborations. Millionaire celebs holed up in mansions are giving us food plans to guard against stress eating. Meanwhile regular people struggle to cope isolation, lost income & fear of critical illness. The focus on the waist line is gross.

I’ve saved the worst for last. The truly terrifying part; medical discrimination. In the wake of covid 19 fat has been pathologised to an even greater extent. BMI has been incorrectly identified as a risk factor for both contracting the virus & suffering more severe symptoms. Weight has been used as a disqualifying factor when resources are scarce. In other words, fat people have been deemed dispensable. I know we’re not alone. Other marginalised groups (some I also belong to) have been marked cannon fodder too. I am ready to fight for the rights of all those people. It’s startling how many members of those groups do not reciprocate my solidarity.

If you’re thinking the jokes & fears have nothing to do with the medical discrimination, you’re wrong. By partaking in the toxic diet conversation you help create a society that considers fat bodies to be less worthy. We live in a world that permits Drs to ignore research on weight & its implications. We accept inaccuracies & damaging advice because the majority still believe that fat is bad. Fat phobia is profitable and fat people are paying the ultimate price.

Black & white photo of plus sized women in knickers holding her breasts

A privileged person’s guide to privilege…

I will never understand why the concept of privilege is so offensive to so many people. Mostly, let it be said, privileged people. It is beyond me why it frightens people to look at the privilege in their life & say yes, that has helped me and no, I did nothing to earn that aid. ‘Owning your privilege’ is merely acknowledging your good fortune. Privilege does not make you bad a person. However, refusing to countenance it’s existence makes you a bit of a dick. Since no one wants to be one of those, let’s go through this together.

If you belong to a group who hold power in society, you have privilege. If you belong to a group that is considered the default in society, you too have privilege. The fact that you do not face institutionalised discrimination just for being who you are is a huge advantage. Being born white, straight, cis, able bodied are all privileges. You will not face prejudice or disadvantages for merely existing in your body. Life is not a level playing field; some of us are sprinting before the starter’s pistol sounds.

Part of this kind of privilege is the fact that you did nothing to earn your advantage. Thus, many people will rail against the notion that they should have to apologise for holding it. Well, no one is asking you to. You are not responsible for the fact that you are white or male or cis gendered. No one is critising you for being any of these (or any other privileged) things. The problem comes when you refuse to own the benefits you have gained from life’s lottery. When some people have to struggle just to reach the starting line, ignoring that becomes offensive. We do not choose what privilege we come into this world with, but we do choose what we do with it. Acknowledge the factors beyond your control that eased your path. Then use your position to clear space for those without your advantages. 

Some of you may be thinking I have one of those privileges you speak of & my life is hard, so I don’t feel ahead of the game. Privilege is not a guarantee of fabulous life. You could be a straight, white, cis, able bodied man & still have terrible things happen to you. The privilege comes in the fact that they did not happen because you were straight or white or cis or able bodied or male. No matter your situation the abscence of the barriers that come with being a minority are still always advantageous. 

It’s also important to remember that it is possible to have privilege in one area & none in another. For example I am white, from a comfortable back ground, well educated, cis gendered & straight passing. I am fully of aware of the advantages my parents have given me and of the discrimination I have never had to face. I hold a lot of privilege. However, I am also disabled, I’m female & I’m fat; all of which incur significant hardships. My daily life is a slog. I do face discrimination & I am discredited, but I’m still lapping my trans, BAME, LGBTQ, impoverished (& so many more) brothers & sisters in the race of life. 

So, privilege isn’t always cut & dry. It does not translate to a perfect life. Nevertheless, it’s a head start. It is a whole bunch of problems you’ll never have to even consider. Privilege is being able to dismiss that the premise is even real. 

In keeping with my entreaty that you use whatever privilege you have to help dismantle the current societal hegemony I would encourage to read these voices on the topic.

Lori Lakin Hutcherson

Strong in broken places

Taking up too much space 

That crazy crippled chick

The Second City

Let’s talk it over…

Chronic illness is a bitch. The pain, the uncertainty & incapacitating symptoms are all a daily battle. Oh, but there is so much more. More that isn’t really talked about outside of spoonie circles & I thought it was about time that changed.

Obviously chronic illness covers a huge range of conditions & everyone’s experience is different. Thus I talk from my own personal view point with some input from fellow spoonies. Here are some of tricky issues that we’re quietly dealing with.

Travel

I mean any & all travel. From trying to get a bus to a hospital appointment to trying to cross the globe. The world is not spoonie friendly. 


Have you ever sat in those seats at the front of the bus that are meant to be reserved for ‘elderly & infirm’. I’m sure you tell yourself it’s fine because you’ll move if someone needs them, right? Well, you can’t always tell by looking that someone needs that seat. Having to explain yourself & ask a stranger to move is not easy. Thus I have collapsed on buses, cried from pain & just had to get off because I couldn’t stand any longer or make it to a seat further back. Which is a pretty good good analogy for trying to get about with disabilities. It can be hard as fuck without anyone noticing. 

Being chronically ill means planing every single outing in detail. Working out if you can manage to get to a bus stop or from a station to the place you’re actually going. Thinking ahead about stairs & where toilets are. Planning when you’ll need to eat, if you’ll be able to eat & how meds will work around that. Worrying about queues & how slow you move & often you’re going to have to sit down. 

I can’t tell you how many times I’ve not participated in something I wanted to because the logistics were just beyond me. 

Relationships

Whatever your illness there will always have to be that early days conversation about what exactly is wrong with you. In my case I have scars to explain & a whole bunch of fairly scary details to talk about. In the beginning I thought that would be the hardest bit, but it so isn’t.
The worst part is all the normal things that are so much more complicated for me. I am completely aware that sometimes I’m no fun. I say no more often than most people. I have many (too many?) limitations. I’ve adapted to that, but I never know if others will. 

It’s scary & stressful to try someone new. They might well get fed up accommodating me. Every time I say I can’t make a social event or have to admit that I don’t fell well, I worry. Maybe this is the point they’ll decide a spoonie girl friend is just not worth it. The truth is, I wouldn’t actually blame someone for having those thoughts. After all, life is for living .

That’s the real kicker, it’s not a problem that can be resolved. Wanting to live a life that I’m not fit enough for doesn’t make anyone a bad person. It’s just another thing I (we) get to think about when I can’t sleep. 

Side Effects

Sometimes the treatments are worse than the illness. Almost every medication I take produces a side effect that impacts on my life. In fact I take medications to help with the side effects of my medications. I’ve taken drugs that have made me vomit, itch, gain weight, lose weight, have double vision, dizzy spells, palpitations, acne, the list goes on. 


Every treatment one is offered comes with a list of possible side effects. Chronic illness is a constant balancing act. How much relief will I get from my symptoms & will it be worth the new problems it will cause? 

I often illustrate this problem like this.

Severe anaemia can cause itchy skin & angina. 

A blood transfusion & opioids can treat these complaints.

Guess what a major side effect of both transfusion & opiates is, yup, really itchy skin. 

Welcome to the conundrum of chronic illness. What cures me might well kill me to. Fun!

Money

Hardly anyone likes to talk publicly about their finances. It’s awkward & it’s private. I hate talking about money, but honestly with regards to disabilities, someone has to. Having any kind of disability almost always screws you financially. What work you can do is limited. Employers will silently discriminate against you & the current  government will loudly throw you to the sharks. All the while ones disabilities will incur extra costs at every turn. In terms of cold hard cash, illness will cost you. Lots. 


The Embarrasment Factor

Never underestimate the power of embarrassment. All of the things I’ve discussed here can make a person feel really small. Be it feeling red faced about a misbehaving stomach or the facing soul destroying humiliation of having to justify your right to be alive at an ATOS assessment. Humility is a lesson spoonies learn over & over. 


Imagine how you felt the last time you farted somewhere you wish you hadn’t & the feeling of falling over on a crowded street & having to talk to a dr about a really cringey complaint & admitting you’ve failed at something important & having to tell the world that you need help with things everyone else can do. Now imagine coping with some combination of all the above every day. Welcome to my world.