by Kate Boyer, Intensive Interaction Facilitator and Mentor
As we come to the end of Eating Disorder Awareness Week 2025, we reflect that everyone has a different experience and a different reason for an eating disorder. We're grateful to Kate for sharing her very personal story here.
Eating disorders come in many varying forms, to me the very umbrella term itself is most peculiar. How can eating be a disorder? Eating is necessary, we need to eat to stay alive. Maybe a better expression would be difficulties around eating. I can relate to that and to me that sounds a tad more acceptable than an eating disorder.
Up until close on seven years ago I enjoyed food, what’s not to enjoy? I loved going out for meals, meals at home, and meals with family and friends, exploring new foods and all the wonderful niceties around food. There have been times in my life I have had to be mindful around my food choices because I was a little on the heavy side, but I always enjoyed food, particularly the social aspects that go with it.
Everything changed
Almost seven years ago I sustained a traumatic brain injury and as a result I have lost all sense of smell and almost all sense of taste. No more smelling freshly baked bread, freshly brewed coffee, walking in the door after work and the waft of whatever is cooking away in the slow cooker, the neighbour’s BBQ in the summer months, walking past a baker's and the aroma of cakes fresh from the warm oven. Not to mention the very best smell of all: Christmas cake, with all those mouth-watering warm spices and fruits conjuring up feelings of nostalgia and memories of Christmases gone by and the one to come. Gone – all of those beautiful smells which I love gone. Those moments of mouth-watering anticipation gone.
54 years is a long time and that is how long I had to live with my tastes, my likes and my dislikes of food before it all changed. It is hard to adapt to something new after such a long time. Suddenly without taste, foods felt very odd. Imagine something like porridge when you can’t taste it; squidgy is the best description I can think of. A Chai latte at Christmas (yes I know that is twice already I have mentioned my favourite time of the year) and it is disappointingly nothing more than warm liquid which doesn’t smell and tastes of nothing. Hot thick custard now nothing more than hot gloop. I could go on but I won’t, I really do not want to put YOU off your food as well! In the beginning this was tough, really tough. I was in the very early stages of recovery and my thought processes were slow, I was physically unwell and still trying to make sense of how I was feeling and what had happened. I could barely make sense of each day, leave alone think about my future.
A new normal
Time moves on though and we have to move on with it and so that is what I tried to do. I needed a lot of neuro rehabilitation for a long time after my injury, and one of the professionals who helped me with my difficulties around eating was my Occupational Therapist. I wish all things good for this wonderful woman, so gentle in her approach, and she normalised what I was going through in such a person-centred way. Of course what I was going through wasn’t normal, it was far from normal but it was becoming normal for me. My new normal. Normal feels familiar, it feels safe and it feels acceptable.
Starting again
So I was encouraged to start again with food. I looked at pictures of food and I was drawn to colour, to crunch, to heat but what stood out most was I completely dismissed anything which looked like a lot of food in one place. So that was where we began – small amounts of food, and that was an excellent starting point.
Next we took the approach if I can’t taste anything then let’s not worry about what it MIGHT taste like, I didn’t even think about that. Instead I thought about what it would feel like: would it be soft, hard, hot or cold? And if I really didn’t like it then I didn’t have to eat it. The pressure was taken away, the demand was taken away and there was no judgement. The non-judgement helped me so much. If somebody is kind enough to prepare a meal for me I do not want to let them down by not eating it, I would feel I am insulting their kindness. It was difficult to begin with to be openly honest and ask that they did not to give me too much food and not to be upset if I physically couldn’t eat it. I found socialising almost impossible for many reasons which I won’t go into right now, but eating with others caused me all sorts of anxiety. I was what I think we call a ‘Foodie’ prior to my injury so seeing me not enjoying food was hard for those close to me. I would feel the same if it were the other way round.
Unscrambling emotions
Whilst in neuro rehabilitation I spent a lot of time with a clinical Neuro Psychologist, and I cannot begin to tell you how much this supported my recovery. Our brains are complex, they are our engine room and they are an extremely clever piece of kit. In a safe space, in a controlled environment and in my own time we began to unpick those scrambled emotions, those muddled up thoughts, and over a long period of time I started to feel better about food. I thought differently about it, I began to enjoy the social aspects of it and even at times looked forward to it. Since the day of my injury I have never experienced the sense of thirst and not felt hungry as such, those senses we take for granted have been taken from me. There have been odd times when I have felt empty but not actually hungry. This has been and still is work in progress. I miss those feelings; that desire for a long, ice cold drink on a hot day, such a simple pleasure and I still miss it. The need for food, those feelings of anticipation, feeling comforted by a wholesome meal.
Acceptance followed by regression
Anyway, I got to a really good place and was eating well. Very different to how things used to be but still good and I was accepting of how things were. Not OK with it but accepting, there is a difference.
Then a couple of years ago I had a full hip replacement and I regressed. It is unfortunate that I am very sensitive to medications and was a tad poorly after the operation. This passed though and in terms of my hip I made a superb recovery. In terms of eating it was difficult and I am still trying to re-set so to speak. At the time of writing I am 2 years and 3 months post-surgery. I had got to the point where I was experiencing some sense of taste, this could be psychological but I am not bothered whether it was real or not, it was still there and that was nice, really nice. That disappeared again, most likely because my brain was having to work super hard to support me to physically recover from my surgery (and all the anxieties around being in hospital), it just couldn’t do anything else. So I was back to square one, literally.
The here and now
So where am I now? Well, I am having to attempt to be creative with my food choices and if my choices are odd, well so be it. I am far better at being honest about how I feel and those close to me have good understanding of my needs and that makes such a difference. My husband and I eat all our meals together, we lay the table, we sit at the table, we turn the TV off, we talk over dinner. We talk about our day, we have that wonderful idle chit chat which we all thrive on. If I go to family for meals there is no attention to food ‘issues’, they put serving dishes on the table so I can take the amount I want, as does everybody else sitting at the table. Back to the no pressure, no demands and no judgement.
I am sure you would like to know if there are any foods I really enjoy now – well yes there are!
- Grapes. I really do like grapes. If they are fresh, very cold and good quality they have a lovely texture.
- Dates, they have to be Medjool dates. I love them. They are chewy and kind of earthy.
- Chilli jam. If it is hot, as in very spicy (generally homemade is far better than shop bought) then I will happily eat it straight from the jar. Particularly good if it leaves a burning sensation on my tongue.
- Crunchy peanut butter. The operative word there is crunchy. A good go to snack if I haven’t eaten for a while is a teaspoon of peanut butter.
Breakfast is a precious time
Breakfast time is one my favourite times of the day. I function best early in the morning and I recognise the need to re-fuel. What I also like about breakfast is it is personal, individual and it is absolutely fine, expected almost, that we don’t all eat the same breakfast even when we eat together. Again, my husband and I eat our breakfast together and I love the social side to it. We talk about our plans for the day, we talk about the daily news, as previously mentioned, that glorious idle chit chat! The day ahead is a new day and I love the early mornings. That is definitely my time of day. The photo with this article lets you see my typical breakfast and when I look at this I feel good. It is colourful, it looks crunchy, and it looks inviting!
Moving forwards
If I were you reading this I think I would be asking if my sense of smell and taste will ever return. No it won’t. My olfactory nerve was completely sheared and this nerve does not re-generate. This means my sense of smell will never return. To be honest with you, I am better having a definite no to that question rather than an open ended answer. I feel we deal with things better when we know what we are dealing with. The ifs, buts and maybes don’t work for me. As for my sense of taste, that is a difficult one to give a definite answer to. Having no sense of smell impairs our sense of taste so it is very unlikely that will improve either. Having said that, food can still be enjoyable but it takes time and flexible thinking to get to that point. Flexibility in thinking doesn’t come easy after a brain injury, well not mine anyway.
And finally…
As I said right at the very beginning, eating disorders come in varying forms and I cannot even begin to understand them. I can’t completely understand my own but what I do know is without the professional input, without my friends and family, without my own determination to get better and without my colleagues (many of whom are dear friends), I wouldn’t be doing as well as I am.
So, if you feel you have some difficulties around eating, however that might look, please ask for help. It is the starting point of getting better. If telling my story helps just one person to begin their own personal journey to recovery then it is worth it.
