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Just one small bite

I’m hungry but I don’t want food. I’ve picked my favourite thing and it tastes bad. You’ve just asked me what I want and I’ve stared at you saying nothing for an awkwardly long time. Someone’s having a party and I’m looking at the menu online before I say yes, I’ll be there.

These are the things that happen when you and food are not always friends. If reading about my experiences may be triggering, feel free skip to the end where I’ve listed things that I’ve found helpful.

One of my earliest memories is discovering that yummy-looking food had medication hidden in it and tasted nasty. Another was being punished for not eating something I now know I’m intolerant to and causes me pain.

With support from friends – patient, understanding, supportive friends – I now eat a much wider variety of foods. I try new things more often than saying no, though I’m still quite particular. I think about my nutritional needs and respond to them as best I can, and accept when I can’t. I ask for more.

In my mid-teens, I weighed about 12kg. I’d been this weight since starting primary school. Every year, I’d be weighed, and see a consultant for my main condition, and a dietician. My weight would be noted, my food-related health issues would be noted, I’d be told to eat more and drink supplements, and then be sent away for another year. This went on for some time, until I switched to adult services which didn’t include a dietician.

I drank the shakes, sometimes, but that was it. I’d occasionally, very occasionally, try something new, but only if I fully had figured out what it was made of and what it looked like and what it smelled like and what the texture would be and if there would be consequences to me not liking it.

I’d hide food, throw away food, give away food, and lie about how much I’d eaten and drank. I’d try to make my leftovers look like less, try to eat the minimum amount I could get away with (but often couldn’t manage that). Of course, I was being “fussy” and “stubborn”; wilfully misbehaving for no reason, apparently.

In secondary school, I would say I had a headache, or backache, and be allowed to go and rest instead of attending biology lessons on nutrition and digestion. Yes, the A* student got away with skiving, as I’d read and could recite the textbook anyway. I didn’t want to compare again how my body didn’t work with how it should work, or what I ate with what I should eat. Certainly not in front of my friends and the whole class. It was my fault that I wasn’t good enough (or so I had been told), and I was too ashamed to confirm that again in my science book.

A very helpful community nurse took an interest once, and got me to write a food diary. She then pointed out that I wasn’t eating enough, drinking enough, or eating the right foods. As if I didn’t already know that. She pleaded with me to make changes, pointing out how much better things would be if I would only do as I was told. I felt even more ashamed, and nothing changed.

Nowadays, I’ve read that avoidant behaviour can be considered an eating disorder, particularly if there are impacts on a person’s health. People are meant to get supported, not shamed (though I’m sure that how things are supposed to go may not match up with everyone’s experience). The reasons behind a person’s choices are listened to and explored.

When I read this for the first time (thank you disability twitter), my brain exploded with “Why? Why did no one check if I had intolerances or sensory needs? Why did no one try to support me? Why did no one care enough to talk to me, really talk to me? Why did no one tell me it’s OK to not like things?”

I have my own answers to these questions, as right or wrong as they may be. Having one set of medical needs was complicated enough; why would anyone go looking for more? I was an embarrassment by not eating at social gatherings; why would what was considered bad behaviour be rewarded with attention in that decade? Kids with eating disorders were thought to look or behave a certain way; why would someone who doesn’t fit that pattern count?

And of course, there’s the usual answer: Disabled kids are too different. Mainstream services don’t cater well for disabled children and young people; specialist services focus solely on their specialism. People fall through the gaps.

I hope this has changed in the last decade and a half. I have.

My weight is low but stable. My body is an entirely different shape, having completed puberty 10 years late. My health is more reliable: I usually now don’t get constipated or feel sick or struggle to breathe through my nose. During childhood, this was my normal.

The only times I’ve got really ill as an adult are when my weight has dropped due to stress making me go back to old eating patterns. I’m more careful now with my stress levels, and have high-calorie low-effort foods ready and waiting.

I try new things all the time now. I make a point of it, a great big “F*** you” to the people who gave up on me food-wise. Sometimes it goes well, and I’ll be hooked from the first taste. Occasionally, it goes badly, and I’ll have a 2-hour panic attack after a single sniff.

There are 2 reasons for this great change:

1. Independent Living. I’ve been living independently with 24/7 support for years now. I am in charge in my own kitchen; I’m in charge of my own shopping. If I want to try something, I can cook it exactly how I think I might like it, knowing that the worst thing that can happen is that I order pizza instead. If I want to eat at an unusual time, I can. If I want to change what I’m having last minute, I can. If I waste food because I’ve over-estimated my appetite, it’s my money and no one else’s that’s been wasted, and I can learn to cook things that reheat well the next day or freeze well. If I have a sudden craving and no energy left to make it happen, Deliveroo will bring ready to eat goodness (I don’t like the gig economy, but in a “I feel a bit faint” situation, it solves a problem). In places where others control the menu, I don’t do well, and usually eat out or order in. At home, there’s no pressure, no consequences, no drama. I’m free to do what I like, whether that’s eat toast for lunch every day or spend an hour batch-cooking a masterpiece.

2. Friends. Great people who know that face that means “I don’t want to but don’t want to disappoint you” or “Give me time, I’m trying to figure out if I’ll like that” or “Yes, but not today” and know supportive responses and accept that. Great people who will trade a bit of their food for a bit of mine, and make it a 2-way thing between equals instead of a dominance/submission thing. Great people who will sit by me whether I greedily destroy the lot without sharing or take one look and metaphorically run away. Great people who will share recipes and think things through with me and suggest ideas, not make demands. Great people who won’t talk about stressful topics before or during meals, or point out how unappetising something looks, instead building a happy and safe atmosphere. Great people who ask “You want some?” only once and listen to and respect my answer, and don’t ask “Are you sure? No? Really? What about some of this? Or this? Or this?” until you give in and eat something you didn’t want. Great people who won’t stare at me to check if I like it, or look at my full finished plate and sigh frustratedly, but will stay on the main topic of conversation and understand my body doesn’t always give me a choice, and that my likes and dislikes aren’t always predictable. Great people who won’t buy food as a gift and create an obligation, but will join me to celebrate at a favourite restaurant and create a good memory. These are the people who have got me to where I am.

Things I have found helpful that may be useful to others, and would tell my younger self:

– Find out if you have any intolerances. Cutting stuff out without medical supervision can be dangerous, so seek support that will listen to your experiences and ideas.

– Learn what your body needs. If you already have a medical condition that affects how your body works, chances are that your nutritional requirements might be different to the recommended averages. If you can, find out safe maximum/minimum values for different nutrients and water. It’s easier to check against a known target than an unachievable “more” and “better”.

– Get good at cooking the things you already like. Have fun with it. Make the best ever version of it.

– Branch out from where you’re comfortable. You don’t have to try something completely different if you think it’s going to go badly. Go with something similar to something you already like.

– Grow stuff to cook. It tastes completely different. I find a lot of supermarket vegetables are full of excess water and sugar, and the fruits are pretty flavourless. I grow and prep and freeze and have food that actually tastes like food available for as much of the year as I can. Farmers’ markets and farm shops can also be pretty good, though some charge more.

– Go to a restaurant with friends and all order a different starter and a side each to share. This way, you have access to new food, prepared for you, but also a selection of reliable favourites with no obligation to try or not try. You can do the same with puddings too.

– Batch cook and freeze. This reduces the effort of preparing food when you’re just too tired.

– Keep standby snacks and shakes. Have options around that aren’t proper meals and aren’t nothing. There may always be days where you look in the fridge and go “nope”, and so I find having reliable not-quite-but-it’ll-do choices available can minimise the impact on health whilst taking the pressure of completely failing away.

– Say no. You don’t have to try anything at any time that you don’t want to. You don’t have to continuously challenge yourself. You don’t have to be perfect every day of every week. You don’t have to change unless you choose to, in your own way in your own time, without being driven by pressure from others. You don’t have to live up to someone else’s unrealistic expectations of how to take care of your health. Figure out what’s important to you right now and how you want to do that. You can be “weird” and “picky” and “boring” as much as you want.

– Relax. The people who best support me to eat new things are the people I can relax around. Put on your favourite music or a good film, grab a comfy cushion or a blanket. Make sharing food part of evening of pampering or games and laughter. Zero stress environments are the most successful for me.

– Talk to people you trust. Some of them may have similar experiences or positive attitudes, and I value their support. This blog was sparked by someone I mentioned all this to in a chat who instantly framed it as “unmet access needs” and I swear I nearly hugged my laptop.

From a contributor who prefers to remain anonymous

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