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 life as a terrible joke

The best evidence I’ve seen for the simulation hypothesis is that my life only makes sense if I exist for the amusement of some cruel and distant intelligence.

I had a doctor’s appointment this week in an effort to get something done about my lipoedema. This is a disorder that affects 11% of women and post pubescent girls. It means that my body lays down dysfunctional fat cells in my legs and upper arms (and possibly bum, hips and lower abdomen). These fat cells are unaffected by diet. They can’t be shifted by anything short of surgery. The fat cells also trap fluid leading to secondary lymphoedema which makes my legs even more swollen. There’s no cure but the progression can be slowed by compression garments and partially reversed by liposuction.

It’s usually triggered by hormonal changes. In my case it started at puberty and got much worse after childbirth. That means that it’s been undiagnosed and untreated for more than 30 years. For all that time I’ve been blaming myself for a weight problem that was in large part outside my control. According to the NHS website calorie restriction is not a treatment for lipoedema (according to most experts it’s not even a good treatment for obesity).

You’d think it would be simple. Get a diagnosis, get referred to a specialist, get fitted for compression garments and get on the waiting list for surgery?

Ha. You must be new here. I can’t get an official diagnosis because there are no specialists in Fife or Lothian. There may be no experts in Scotland. I can’t get fitted for compression garments because the off the peg ones don’t come in large enough sizes and the nurse says the doctor needs to measure me for the made to measure ones and the doctor says she doesn’t do that and I probably shouldn’t get them without first getting a Doppler test to prove my circulation is good enough but the Doppler sleeves won’t fit over my legs.

Did you get all that? I can’t get treatment for the condition that causes hugely distended limbs because my limbs are too distended.

And I can’t get surgery because it’s not available on the NHS because liposuction is a cosmetic procedure.

So my only option is going back to calorie restriction and hoping that there’s enough healthy fat in my legs that removing it will somehow make a difference. So I’m going back to a treatment that has a 95% failure rate for the thing it’s actually supposed to treat and doesn’t work at all on the problem I want treated. And it’s only taken 4 doctor appointments and 2 nurse appointments to find this out.

I suppose if I lose enough weight that my face, hands and feet become noticeably emaciated then maybe I’ll be able to get a doctor to take the problem seriously. Maybe I’ll be able to starve myself into organ failure while still being clinically obese. I might even get mentioned in the medical literature. Fame at last.

Perspective shift

Last year I was diagnosed with lymphoedema. At the time it just seemed like yet another thing wrong with me. I almost asked the Doctor why he bothered telling me since it’s just another thing that I can’t fix. I did some research and found that it was either genetic or caused by being fat and while I was suspicious that it might be genetic it seemed more likely that it was caused by being fat. So not only did I have a new thing wrong with me that I couldn’t fix but it was probably my fault.

Today I found out that my research was wrong. My lymphoedema would appear to be caused by Lipoedema. It makes sense of a lot of things. It explains the leg pains I’ve had for years, the way my legs were huge but my feet didn’t have any fat on them, and especially the time I lost more than 8 stone (119 lbs or 54 kg to be exact) and saw little change in my legs – my body was 8 dress sizes smaller than my legs.

Now I was only able to lose 8 stone because I did get really fat. But not until after I tried anorexia for a while. I had fat legs when I was anorexic too. I don’t mean imaginary fat legs. I mean the last day I was actively anorexic I was 13 years old and I was wearing a t-shirt sized for a 11-year-old girl and size 10 women’s trousers which only just fitted over my knees and thighs but fell off without a belt.

When I stopped restricting my food intake my disordered eating snapped back in the other direction and I took up binge eating. Which didn’t help my legs or my already fragile self esteem. Every time I tried to change my eating habits I found that I couldn’t keep it up. The anorexia had left me unable to see any positive change in the mirror and the lipoedema meant that I wasn’t getting much positive feedback from my clothes.

I used to describe my teenaged self as fat and depressed. But maybe I was just an average girl with undiagnosed lipoedema and ADHD. I spent my childhood and teen years feeling stupid and worthless and deformed and it’s cast a long shadow over the rest of my life. What would I have been like if we’d known what was wrong?

The thought of it makes me feel queasy. I can’t think properly because of the unfamiliar sound of some part of my mind repeating “It wasn’t your fault. None of it was your fault.” It feels weird. I tend to assume that everything is my fault.

New Diet!

I’ve discovered a cool new diet specially for those of us suffering from chronic pain disorders. It’s the “I hurt too much to get food” diet. I’m going to lose so much weight.

All the food is in the kitchen. I am currently not in the kitchen. I’ve already taken the maximum dose of painkillers and the pain is still bad enough to make me feel nauseous. Hobbling through there so I can stand for a while on a leg that thinks it’s got an axe sticking out of it so I can prepare food that my stomach thinks I can’t keep down doesn’t feel like it’s worth the effort.

There’s probably a creative solution to this but the problem with taking the maximum dose of painkillers is that now I’m too full of synthetic opioids to think clearly. Also my face is numb but my fucking knee still hurts. How is that fair?

Bloody knee. I’ve had enough of its bullshit. I didn’t fight off two eating disorders just to fall back into one of them because my knee is a drama queen.

Second Eating Disorder Post

People have been asking when I was going to write more about Eating Disorders.  Which kind of surprised me.  I didn’t expect it to be a popular subject. I’m afraid this is going to be quite a short post. I’m a bit drained from a combination of Real Life drama and working all week on a piece of flash fiction.

Which, frankly, is ridiculous. Two thousand words of fiction shouldn’t take a week or be so tiring.  I’m working towards being a proper full time writer but I just don’t have the spoons for it (check out spoon theory for an explanation).

It’s important when talking about Eating Disorders to define terms. Most of the time when I talk about Anorexia I’m actually talking about Anorexia Nervosa. Anorexia just means “not eating” and it’s a symptom rather than a disorder. I know someone experiencing anorexia caused by an as yet undiagnosed digestive disorder. She’s not eating because eating causes her pain. Her digestive disorder is being investigated but first the doctors had to be sure that she wasn’t choosing not to eat.

Of course choosing is probably the wrong word. Anorexia Nervosa is more than just deciding not to eat because you want to be thinner. It’s not even choosing not to eat because you’d rather be dead than fat. Anorexia Nervosa, like the other eating disorders, is a compulsion. It might start out as a diet but it doesn’t stay a diet for very long.

When I talk about Bulimia I mean Bulimia Nervosa. If you’re not used to talking about Eating Disorders you might associate Bulimia only with vomiting but the word Bulimia comes from a Greek root meaning “ravenous hunger”. Bulimia Nervosa is all about binging and then trying to undo the “damage” caused by the binge. Some Bulimics purge by vomiting or using laxatives or diuretics.  Some try to burn off the calories through compulsive exercise or stimulants. Both kinds may be fasting when not binging and every Bulimic I’ve ever met seemed to really want to be Anorexic.

Compulsive Eating Disorder, Compulsive Overeating Disorder and Binge Eating Disorder are often used interchangeably. Personally I think it’s a bit of an oversimplification. Compulsive Eating Disorder is so general that you could apply it to any Eating Disorder. Binge Eating and Compulsive Overeating are not the same thing. Not everyone who overeats compulsively does so by binging. Some Overeaters eat “normally” most of the time but regularly binge. Some Overeaters graze. They don’t eat much at a sitting but they are constantly nibbling at something and get panicky when they feel there’s not enough food in the cupboard. Both kinds of Overeaters may hoard food and then not eat it because simply having it in the house makes them feel more secure.

One thing that all these kinds of Eating Disorders have in common is that they make the people suffering from them miserable. They ruin lives. They shorten life-spans. They damage families.

I think that’s enough for now.  I’m not sure what my posting schedule is going to be for next week.  If anyone has any questions please feel free to ask them in the comments.

My first Eating Disorder post

There’s a new part to the current story over on my fiction blog here and the contents page linking to all the parts is here.  Since I’m going to be talking a little bit about eating disorders I shall absolutely understand if you’d rather go read that instead.

I’ve been thinking about this for ages and it’s still all rather muddled so please excuse me if it all comes out in the wrong order.

The first thing to say is that you can’t tell if someone has an Eating Disorder just by looking at them.  Well you can’t.  I can make an educated guess if I see them eating or interacting with food but I still won’t know.  It’s possible to be very slender and be perfectly healthy.  It’s possible to be dangerously thin because of a physical disorder.  It’s possible to get pretty fat without an Eating Disorder and both depression and physical illness can cause rapid weight gain.

The second thing to say is that even if you know that someone has an Eating Disorder because they, or a medical professional, has told you that they do you still can’t tell which one based on body type alone.  It’s easy to assume that a skinny person with an Eating Disorder must be Anorexic and a fat person must have Binge Eating Disorder and anyone in the middle must be bulimic.  No.

Some of the thinnest, and sickest people I’ve met with Eating Disorders were Bulimic.  I’ve also known some overweight Bulimics.  I used to know a recovering Anorexic and a recovering Compulsive Eater who could have passed for twins in spite of not being related at all.  Both of them were in the healthy range of BMI (Body Mass Index).

The third thing I need to say is that Eating Disorders are mental illnesses with physical symptoms.  The problem is in the mind.  Not the body.  If the mental problem isn’t fixed then no amount of eating the right stuff will work in the long term.  A person with Binge Eating Disorder can’t just stop over-eating any more than a person with Depression can just cheer the fuck up.  A person with Anorexia can’t just eat a fucking burger any more than a person with Schizophrenia can just stop hearing voices.

You also need to know that Eating Disorders are tricky things.  A person might start of with one and have it mutate into any of the others.  Practically anything you say about Eating Disorders will have exceptions.  Trying to pin down anything about Eating Disorders is like trying to nail custard to the side of a moving van.

That’s it for now.  I’m going to go into a lot more detail in the future.

Stuff I might write about

I think I’m going to be writing about eating disorders but not today. I have a lot to say about this subject and it’s all still a mess inside my head.  I’m going to talk about how I think an eating disorder can develop and whether it’s possible to cause a person to have one. I’m going to talk about how they don’t look like you might think they do and the legacy of having survived one.

I’m aware that some people will prefer not to read about this subject either because they aren’t interested, or because they know me and they’d prefer not to hear about this aspect of my life, or because they’re worried that it will trigger disordered eating habits. I will try to make the content clear from the title of each post and even If I end up writing a bunch of huge posts all at once I will try to schedule the posts so that they don’t all come out together.

I don’t have any answers so please don’t slog through all the posts expecting some sort of neat wrap up at the end.