Since it’s Eating Disorders Awareness Week, I want to talk about the ugly reality of eating disorders — the parts that never get shown in the “inspirational” recovery posts, before-and-after photos, or neatly packaged awareness campaigns.

Eating disorders are NOT aesthetic and they are NOT glamorous.

This list will also be helpful for me — because these are also my reasons to recover.

1. I Am Cold ALL Of The Time.

The only time I feel truly warm is when I take a scalding hot, lava-temperature bath. The relief from the cold is so intense it makes me want to fall asleep the moment I get in. Since my body doesn’t have enough energy to keep me warm, my veins are always protruding, even if I lift my arms over my head. I look blue and lumpy.

There is no point in having a smaller body if I have to bury it under layers of clothing just to survive the cold, or if my bones hurt so badly from the chill. This isn’t like normal cold. It’s painful, relentless, and impossible to ignore and it’s VERY difficult to get warm again even when you have returned home.

And yet, I still have to hide it because I don’t want to trigger anyone else or make people uncomfortable. I can’t just exist anymore without uncomfortable questions.

2. It’s PAINFUL To Be Bony.

Even though the scalding hot water is the only real relief from the cold, I still can’t even enjoy a bath — because my body is so lacking in cushion that it hurts to sit, my bare bones pressing against the hard ceramic tub.

Going to bed is no different.

The mattress hurts my hips, and when my knees press together, they ache. There is NO position I can get into where my bones don’t hurt. I can’t sit for too long without having to rearrange myself, because even a sofa or a bed puts pressure on my bones in a way that’s PAINFUL.

I sleep on a memory foam topper with a duvet over it for extra padding — and it still hurts.

And yet, I catch myself body-checking constantly. It’s like my brain needs to make sure my bones are still sticking out.

Every time, I stop and think:
“Why do you need to check? OF COURSE they’re still there — THEY HURT. Duh.”

3. My Hair Is Falling Out — EVERYWHERE

I’m 41 years old, and this is far worse than it was when I was younger. My hair doesn’t just shed when I brush it. It’s on the floor, the sink, my pillow, my clothes — everywhere. It’s thinning rapidly and breaking easily. I’ve been driving my son mad with how much hair is over every floor in my flat despite cleaning it up often.

At the same time, bodies grow lanugo everywhere. Underfed bodies that don’t have enough energy to keep themselves warm, explained in point one, will compensate by growing peach fuzz everywhere. You become a human peach.

Being older, the symptoms of being underweight hit even harder. When I was younger, my body could take more abuse. Now, it’s already telling me that it’s falling apart and I’ve only been a year in this relapse. The hair issue is one of those symptoms that I didn’t have until my BMI was really freaking bad last time, this time it happened on the way down to here.

4. The Tesco Carrier Bag Skin.

At 41, loose skin is far worse than it was when I was younger. I haven’t lost 100 pounds, yet my skin acts like I have. There’s loose skin on my neck, legs, face — everywhere. It’s thin, crepey, and sags in a way I never expected. I saw myself in the mirror after a bath and had a massive meltdown.

Because I know how to fix this. I have to gain weight. But the thought of doing that, not as simple, I’m absolutely terrified and deep in a mental illness.

5. My Concentration, Memory, and Immersion Are Nowhere To Be Found.

I can’t read or play video games anymore. My brain won’t let me.

I already have memory issues — from being 41, from taking Quetiapine — but now? I can’t remember anything at all. If I’ve repeated myself on my blog, I have NO IDEA. Every idea or thought feels brand new, even if I’ve already written 2,000 words on it. My working memory is severely affected. Talk to me today, I might completely forget the content of the conversation tomorrow.

My brain REFUSES to let me get immersed in video games. It’s too food-focused to feel safe enough to let me drift off to Night City. The same is true for books. I can’t sit still. The words don’t absorb anymore.

The reading issue is new. I had found a way to read that worked with my neurodivergence, and then, suddenly, I couldn’t do it anymore. Concentrating on blog posts is also incredibly difficult. I sit on them for days — partly from anxiety, but also because I struggle to focus enough to say what I need to say.

Research suggests people suffering with anorexia, their brain’s can suffer some atrophy. Whilst a long period of weight restoration can help and even reverse this atrophy, it has been enough to be visible on MRI’s (Brown & Mehler, 2017). Hence I’m struggling with concentration because my brain is severely underfed.

6. Food Focus Makes Me BORING.

Following on from the last point, the only thing my brain wants to engage with is food content. If you have an ED, be prepared for your hyperfixations to become ENTIRELY food-related.

Cooking videos, What I Eat in a Day content, cheat day videos — it’s all my brain wants to consume. Very boring. Wouldn’t recommend. And yet, my brain is obsessed. It feels like a compulsion to watch them.

Suddenly, what everyone else is eating becomes VERY interesting to me. Again — boring. I have to actively stop myself from saying anything, because food shouldn’t be commented on. But if someone else brings it up — like saying they love Domino’s — suddenly I’m excitedly talking about everything I love about Domino’s like I’m some kind of expert. Even though I don’t even eat it right now.

The last time I was struggling with anorexia, I also had a compulsion to hoard food. That turned out to be weirdly useful when extreme hunger hit during recovery, because I had so much food stored up. But none of it was food I would have actually eaten when I bought it.

I’m not really hoarding anything this time… yet.

My brain is so fixated on food, I think about it constantly. I dream about it. I count down the hours until I can eat again.

It’s the only thing I can focus on.

7. Poor Digestion and Looking Bloated AF As Soon As I Eat a Snack

It’s quite common to experience gastroparesis-like symptoms when you’re undereating. I’ve found that I suffer with it off and on — some days are worse than others.

Gastroparesis causes painful bloating and fullness, even after the smallest snack or meal. It also makes eating physically painful due to the stomach cramps it triggers. Hydrating properly is difficult too, as even water can hurt. The gastroparesis pain always freaks me out that my heart is suddenly failing.

Since not enough food is moving through the digestive tract, and metabolism slows to a crawl, everything slows down. This leads to constipation, more bloating, and worse — haemorrhoids. Lovely. But hey, we’re deglamorising eating disorders here.

This only gets worse with age. Perimenopausal people like me are already more prone to haemorrhoids, and undereating just makes everything worse. On top of that, incontinence (both kinds) is also a possibility for anyone with an eating disorder. Muscles weaken and proper muscle tone is required for the proper digestion and keeping things inside.

So far, I’ve been lucky to avoid that this time, but last time it absolutely happened. It wasn’t like normal incontinence either, like when you laugh or cough, but it just happened randomly while being completely stationary.

8. I Have Mood Swings AND Emotional Blunting at the Same Time

We all remember that Snickers advert — “You’re not you when you’re hungry.” Having anorexia goes beyond that. You are absolutely NOT you when you’re restricting. It can cause severe, sudden irritability, especially when it comes to food and weight.

The scale has a lot of power over my mood. I try not to weigh myself religiously and limit it to once or twice a week, but even then, it can ruin my entire day. Whether I’ve lost or gained weight, it can trigger a complete meltdown.

If I’ve lost weight, Clippy (my ED) is pleased, but I’m also hit with the realisation:
“Great, I’ve just gotten WORSE.”

And at the same time, I can’t fix it. That thought is incredibly depressing. If I’ve gained weight, I often rage at how broken the maths of it is. When your metabolism has slowed to a crawl in anorexia, the scale stops making sense.

People love to talk about calories in vs. calories out and say you can’t go against the laws of thermodynamics. But I get mad about that, because thermodynamics applies to closed systems. A starving body is NOT a closed system. It starts breaking itself down just to keep weight stable — bones, muscles, organs.

Basically, there’s A LOT of irritation.

At the same time, there’s also a lot of depression. And emotional blunting.

You don’t feel what you used to feel about the things you love. There’s just emptiness where joy used to be. You only have the memory of loving what you love.

Do you LOVE video games? Prepare to feel meh about them and then grieve for both video games, and the you that used to enjoy them.

9. I Could Literally Perish And That Gives Me Anxiety CONSTANTLY

Sudden death. Congestive heart failure. A severe fall from dizziness and lightheadedness.

It’s all possible.

Anorexia is one of the deadliest mental illnesses. I think about that a lot. I often go to sleep wondering if my heart will just give out. The thought makes me SO anxious, which makes my heart rate spike, which makes me even more anxious — a vicious cycle. It’s incredibly hard to sleep at night.

Given I am alive, the unglamourous side effect this point currently causes me is having a massive panic attack in bed, because I have convinced myself I might not wake up.

10. I Hate Myself in an Entirely New Way

Being 41 with an eating disorder has made me feel so broken. And, honestly? Stupid.

I know it’s not, but society constantly pushes the idea that eating disorders are a “young person’s issue.” Yet here I am, at 41, still struggling. And I hate myself for it.

I wouldn’t judge anyone else my age for struggling — it makes so much sense to me, especially after experiencing perimenopause. But I can’t apply that same grace to myself.

Because I’ve had an eating disorder for most of my life, this relapse feels like I’ve regressed YEARS. I thought I was handling weight restoration well. I still had an eating disorder, but I proved I could maintain a healthy weight for 12 years.

So why am I here now?

I can see everything I’ve written in this post, logically. And yet, I still can’t get myself to eat more food and work back toward weight restoration.

Last time, I brute forced it. I didn’t get the help I actually needed – EVIDENTLY, I’m struggling with all of the SAME things — I just forced myself through it.

And now, I can’t even do that.

This Isn’t an Exhaustive List.

There are plenty more unglamorous symptoms I haven’t even gone into. I’ll leave some further reading below due to mentioning a study in this post, but everything here is based on my personal experience.

This is the reality of my eating disorder.

There is nothing glamorous about it. It’s painful, exhausting, and, at worst, deadly.

I don’t have a hopeful resolution to offer — because I’m still in it. But I know it can get better than it is, because I have been weight restored before.

But if nothing else, I hope this post shows just how serious eating disorders really are — especially for those of us who have lived with them for decades.

Sources – The Oxford Handbook of Eating Disorders – edited by W. Stewart Agras, Athena Robinson. This book goes into very high detail about the side effects of eating disorders backed up by science.

Heres a theme tune for this post, because eating disorders are apparently so glamourous.