It’s not the pain that’s the worst it’s the rage

Every day the first thing that I do is to fight with my compression tights. And also my self image and my failing body. I say it’s the first thing but really the first thing I do is to wake up and curse the fact that I am awake and alive and that my life is still like this. Then I muster my limited mental resources for the act of will necessary to get out of bed. Then I fight.

It makes me so fucking angry. Getting up every day to fight a losing battle against the Lipoedema that will eventually turn me into a blob in a wheelchair. Being faced with the reality that I’m not strong enough to get my fucking tights on properly. Knowing that if I can’t master compression garments I won’t even get on the waiting list for the surgery that is the only lasting treatment.

Spending the next hour with weak arms and shaking hands because I’m not getting any better at this. Unable to go anywhere because I can’t get the tights to stay up while I’m walking. Fighting the urge to stab myself. To hack at the useless, lumpy flesh that’s destroying my joints.

And then I spend the rest of the day surrounded by the evidence of the chores that I can’t do because I’m too exhausted from my battle.

I’m trying to get better. I diet even though I hate it and I know it won’t fix the lipoedema. I try to exercise even though that hurts and so far actually seems to be making things worse. I’ve been trying the 100 squat challenge. It took me 3 days to get up to 100 squats but I haven’t managed it since because my right knee hurts too much. The knee pain woke me up this morning.

And the absolute worst is the feeling that it’s all worthless. What’s the point of all this fighting? All it does it makes me angry and tired. I’m giving up the ability to get stuff done now for the chance to be able to do more in the future. But that’s just not going to happen. I don’t get that lucky. This fight is doomed to failure and by fighting I’m making everything worse right now.

 

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My problem with body positivity

Strictly speaking I have two problems with body positivity. One is definitely my problem. I think the other is a problem with the movement.

Let’s talk about my problem first. I’d rather own my problems before I go pointing out other people’s. My problem is that I find that I cannot love my body. At best we exist in a state of détente but most of the time we are at war. I hate how it looks. I hate that it’s never comfortable and that I am never comfortable in it. I hate the constant negotiations to get it to do anything. Most of all I hate how limited that anything is.

I want to be strong. I want to exercise. I want to go for long walks. But I can’t lift weights today because I put my compression tights on and apparently that’s me done for the day. As I write this my hands are still shaking just from the effort of getting dressed. How dare they.

And this, of course, creates a secondary problem. Because people keep telling me that I should love my body and I just can’t I feel like I’m letting the side down. Not only am I failing in my patriarchal duty to be decorative I’m failing in my feminist duty to love myself. I’ve failed to be thin and now I’m doing fat wrong.

Now let’s talk about my problem with the body positivity movement, and specifically the ‘healthy at any size’ part of the movement.

Because some of us are not healthy. Some of us are fat because we’re sick. Some of us are fat and sick with no causal link. And then there are people like me. People with lipoedema and similar disorders. People with dysfunctional fat cells that we can’t get rid of. We’re not sick because we’re fat, it’s the fat that’s sick.

I’ve written before about lipoedema. It affects up to 11% of women and post pubescent girls. It’s triggered by hormonal changes. It’s progressive. In many cases, and I am one of them, it is painful and debilitating. Our bodies lay down dysfunctional fat cells that don’t work as an energy store. These cells hang around in the wrong places, trapping fluid, putting pressure on our joints, and causing pain.

Before anyone slides into my comments to tell me that I just need to eat less and move around more my anorexic thirteen-year-old self would like to have a word with you. And she’s carrying a cricket bat. I’d run if I were you. No, faster than that. She’s spent the last 4 years running from people throwing rocks at her head so she’s a lot faster than me. No don’t stop for a rest she’s got plenty of stamina. Try to find some flowers. If she gets a lungful of pollen she might have to stop for an asthma attack.

But back to body positivity and my problem with it. I feel stuck. The lipoedema support groups are full of internalized fatphobia and people whining about how they should be immune from societal fatphobia without ever questioning that it should exist. The body positivity groups erase my experience of being disabled and fat. The insistence that fat women are hot just reinforces the patriarchal assumption that whatever else a woman is she must also be decorative. What if I don’t want to be decorative? What if I want to be a dapper androgynous badass?

Can’t I want to get rid of my dysfunctional fat while at the same time supporting your right to look however you want to look? Can’t we all agree that how people feel about how a person looks has nothing to do with their value as a human being? I just want to be in the world without the feeling that either I have to cut parts of myself off or excavate a me-shaped hole in order to fit in.

Photobomb

I made a terrible mistake this week. I looked at a photograph that I was in. It was a group photograph and those don’t usually hurt so much but for some reason the photographer put me in the front.

I’ve always hated being photographed. When I was a kid I hated it because it invariably involved some adult shouting at me to look happy and not squint while I stared directly at the sun and waited for my brothers, or cousins or peers to stop making stupid faces. In the 70s and 80s every adult seemed to believe that photographs could only be taken in bright sunlight with the sun shining directly in the faces of the subjects.

As I got older I began to hate being photographed because I knew that I would ruin the finished picture just by being in it. I hated how I looked in real life and I hated the photographs even more because they were proof.

I tried to be behind the camera whenever possible. If I was behind the camera then the sun was at my back and not on my face. If I was behind the camera I wouldn’t later be faced with the full horror of whatever I was wearing, or whatever terrible haircut I had, or the fact that in spite of all my dieting and prayer I was still fat.

Besides the pictures were usually better if I took them. I am a competant ammature photographer. I’m not talented and I’m certainly not professional but I spent a lot of time trying to be an artist and I did learn a few things. I know enough about composition, proportions and framing to take a picture that looks like it was taken on purpose.

When I first realised that I hated how I looked I thought that it was just me. I thought that I must be uniquely hideous and everyone else was fine. But then I noticed other people complaining about how they looked or trying to avoid cameras. I decided that most people must hate their appearance, even the beautiful people, I thought that maybe it was a kind of self-consciousness and that most humans had it.

Then the selfie became a thing and I realised that when most people complain it’s either because they’re scared of looking vain or they’re objecting to a particularly bad photograph. Most people seem not to think that they look hideous in every single image, and also in the mirror, and in every reflective surface they pass.

And the worst thing is that I can’t stop looking. Every time someone takes a picture of me there’s this terrible stab of hope. Maybe this will be a photograph where I don’t look like a cone wearing borrowed clothes sitting on top of a pair of misshapen tree trunks. Maybe they’ll have found the precise angle where my face doesn’t look like a Wicked Witch of the West themed Mr Potato Head.

Actually that’s not the worst thing. The worst thing is that I care. Why do I care? I don’t care what anyone else looks like. If one of my friends got beat with the ugly stick and then inflated with a tyre pump I wouldn’t think any less of them. I’m a writer not a beauty queen. Looking good is not part of my job description. It doesn’t matter.

I really need to either stop caring or stop looking. Unfortunately right now what I want is to stop going out. There’s a part of me that thinks that I’d be happier if people couldn’t see me.

Maybe I don’t care how I look? Maybe I only care that other people care?

My problem with body positivity

I don’t have a problem with the Body Positivity movement as long as it’s your body we’re talking about. You look fabulous, by the way.

I just can’t be positive about my body because there’s nothing positive about it. My problem is not that I’m fat. Fat is not a problem. My problem is that my body is a worthless piece of toxic trash that has been torturing me almost from birth.

I hate my body. Everything I’ve achieved I have achieved in spite of it. All it does is slow me down. I can’t rely on it. It turns the food I eat into dysfunctional fat cells that lock the energy away. I can’t access that energy and the cells just build up on my legs looking fucking hideous, hurting and stopping my joints from working.

I’m trapped in this fucking cage. It doesn’t work. I can’t fix it. It’s made my life a living hell. There’s nothing I could ever have done to fix it. I’ve been struggling my whole life, blaming myself, thinking that I was a failure and the whole time it’s been beyond my control. I was doomed from the start.

If there was any justice in the world I’d be offered a do-over of some kind. But there isn’t so I’m just stuck here until this body stops working completely. I feel like my entire life has been wasted. Not just because this body sucks but because I’ve wasted so much time blaming myself for something that was outside my control and trying to fix something that was never going to work.

No more. Fuck this body. I’m done putting up with its bullshit.

Well I say that… but even as I type this it’s making a spirited attempt to get me to stop. My back is cramping up. The pain is all I can think about. My body is demanding that I stop typing and go back to bed or something. Realistically there isn’t much I can do about it.

Not a real person.

One of the things I struggle with a lot is the feeling of not being a real person. I think some of it is imposter syndrome and some of it is a throwback to the bullying I grew up with. When everyone tells you that you’re ugly and stupid and worthless you tend to start believing them. If you’re smart enough to know that it’s not true you still can’t help suspecting that you’re not a real person because who would treat a real person like that? Real people have rights. Miss-treating real people has consequences.

But lets not forget that for a lot of people I am not a real person. I am a poor, disabled, depressed, fat, middle-aged woman. You’d be surprised how many people will lose interest in my humanity the moment one of those trigger words is mentioned.

There are a few men for whom no woman is a real person. They might not express it this way but it’s clear that to them personhood is a uniquely male quality. That’s why they think that rape is not a thing. Because they think that only male desires count. If you think of women as objects then of course you don’t care about consent.

There are a larger group of men for whom women are people but with an asterix. They say woman* or female* but that asterix leads to some mental footnote that defines a woman according to some personalised criteria. If you listen to them long enough you find out that woman means a cisgendered, hetrosexual (or bisexual but only for male entertainment), able-bodied woman, between the ages of 17 and 35, with a BMI in the underweight or normal weight range with an attractive face (and if she’s a woman of colour she’d better have a really attractive face) and “good” breasts. The rest of woman-kind doesn’t count as female because we have failed in some aspect of our femininity. Remember that to them the primary purpose of a woman is to be decorative. It doesn’t matter who we are or what we do only how we look.

There’s a lot of people for whom poor people aren’t really people. That’s why they don’t care about minimum wages or benefits or social housing. The assumption is that poverty is some kind of moral or intellectual failing rather than a necessary side effect of capitalism.

Some people make similar assumptions about both physical and mental health. There’s an almost superstitious belief that ill-health and injury must be a punishment for something. There’s also a surprising number of people who are happy to declare that depression, anxiety, ADD, ADHD, OCD and autism are “all in the mind”. Which of course they literally are. They are illnesses of the brain. They cause changes in brain activity, neurochemistry, and sometimes in the physical structures of the brain. No amount of willpower is going to remake the chemistry, activity or gross anatomy of your brain. You can’t just get over it.

I don’t understand why it’s so hard to agree that people are people.

Regardless of skin colour, nationality, religion or lack thereof, political affiliation, age, sexuality, gender identity, nationality, wealth, health, ability or IQ there is only one Homo Sapiens species. We all belong to it and we are all people. Even me. Even when I don’t feel worthy of it. Even when people in power are trampling all over those rights that I have but for some reason can’t use.