Growing up, all I really knew about eating disorders was the brief mention of anorexia in Jacqueline Wilson’s ‘Girls’ series or the rare article on someone overcoming bulimia in the teen magazines I read. Women’s relationship with food and the societal pressure to look a certain way was not widely discussed. Girls who nowadays would have been identified as at risk of developing an eating disorder were labelled fussy eaters or just ‘on a diet’. The only eating disorders I had ever heard of were anorexia and bulimia. If your eating pattern didn’t fit into either of those two categories, then you were just an awkward eater and sent on your way.
In recent years, conversations about diet culture, restrictive eating and eating habits have become more common and because of this we are able to identify, diagnose and support people with a wider range of eating disorders. Avoidant/Restrictive Food Intake Disorder, or ARFID, is an example of an eating disorder that has only very recently been talked about enough to become recognised.
Emma Naylor is someone who has ARFID and is recovering from anorexia. Until contacting Emma, I had never heard of ARFID. ARFID is similar to anorexia due to restricting food intake, however it centres around the person’s relationship with the food itself rather than body image. People with ARFID are not necessarily underweight. It is an eating disorder where negative past experiences or sensory issues like sight, texture or smell lead to anxiety around mealtimes and, in the worst cases, total avoidance of food.
Emma’s relationship with food has been a difficult one that has impacted a lot of her life. She has struggled to be understood, to be heard, to be helped. Despite it taking years to get a diagnosis for her condition, Emma has not let this tough journey break her. If anything, it has made her more determined to help other people. Emma is not only a gifted dancer and dance teacher, but she works as a support for children with additional needs and volunteers at a children’s hospice. She has dreams of becoming an Educational Psychologist to ‘help those who struggle within school like I did’.
When I read Emma’s words, not only did I learn about ARFID, anorexia and distorted eating, I also learnt how incredibly strong she is. To be able to speak so openly and eloquently about something that she will have been told numerous times isn’t real, is put on, is just her being awkward is something to admire. I am so grateful to Emma for sharing her story and hope that she realises how brave she is for doing so. There is no doubt in my mind that she will help many, many people by telling it. Her story is one we can all learn from and her strength something we can all admire.
In your own words, can you describe what it was like growing up with undiagnosed ARFID?
Growing up with ARFID, without it being diagnosed, was hard. I always felt different to everyone else and often wondered what was wrong with me. I didn’t do what all the other kids did. When it came to snack times as ‘rewards’ and activities like cake making, it brought on extreme anxiety for me and I would end up spending the rest of the day crying or wondering why I couldn’t be like everyone else. I wouldn’t go to friend’s birthday parties or sleepovers because I didn’t want to look stupid and had extreme anxiety that I would be forced to eat something I didn’t like. I worried about things like gagging in front of them from being around what they ate. My parents and brother ate separately to me. When I was younger, I couldn’t even walk into the kitchen when they were making the food as the smell would make me feel ill.
Trying to make sense of such extreme reactions to food from such a young age must have been incredibly confusing and isolating for you. How did it feel to finally have a diagnosis of ARFID?
I would describe it as a relief to have a diagnosis in that it helped me realise that there was nothing wrong with me, I wasn’t alone and that there is a genuine reason why I am the way I am. However, it was also confusing. For a long time, I felt that it was a label that defined me and I was extremely ashamed of it. I became really secretive about my diagnosis and it made me feel uncomfortable going for meals as I knew there was something different about me that I didn’t want other people to notice. I am okay with my diagnosis now, it helps me to better understand myself and the relationship I have with food, however, it’s not something I really tell people.
Little is known about ARFID and I imagine there are some people who don’t see it as a ‘proper’ condition. What kind of reactions do you get when you tell people about ARFID?
Personally, I don’t tell many people about my ARFID as I feel a little embarrassed about it. My mum on the other hand has told lots of her friends who tell her ‘my daughter wouldn’t be getting away with this’ and ‘you’re too soft’. I have had medical professionals who have never even heard of it and look at me like I am making it up. It is extremely frustrating when people do not understand or even try to – it almost makes you feel like you’re not even worth the understanding and it leaves you feeling even more of an outcast.
It must be incredibly tough for you and your mum to hear things like that when you know that what you experience is very real. What do you wish people knew about ARFID?
I wish people knew it wasn’t a choice and I am not just a rebellious child trying to control my mum or whatever misconceptions they have. I genuinely didn’t choose to be this way and anyone who has ARFID isn’t just ‘picky’ – it’s a genuine eating disorder, a genuine medical problem and if we could help it, we would.
You developed anorexia alongside your ARFID. Can you describe what life was like with anorexia?
Life with anorexia was extremely restrictive and lonely. I was completely consumed by numbers, weight and thoughts about food. I had an extremely rigid plan of what I was allowed to eat right down to the gram and often weighed my food to make sure it was no more. I became miserable and had no energy whatsoever. You could say I became a completely different person – I was constantly in a state of ‘hangriness’, snapping at every little thing, screaming at my mum but the weird thing was I felt no remorse afterwards. Obviously now I feel terrible that I treat my mum the way I did but my brain was so starved and I was so tired that I couldn’t even express an emotion, not happy, not sad, not anything.
I know that your mum has fought passionately for your relationship with food to be taken seriously and for you to be heard. Did it make a difference to you to have your mum fighting for you to get the help you needed?
In some senses it helped. It helped me to feel understood but in other ways it was just meant that there were two of us not being listened to. I guess I wasn’t alone, but it didn’t make me get taken seriously. My mum was turned away from doctors saying I would grow out of it or I was just trying to be controlling, so in reality it didn’t help us get help.
It must have been incredibly frustrating for both of you to ask for help and not be heard. ARFID seems like it impacted a lot of your life – as a dancer, how did your relationship with food impact your dancing?
My relationship with food really impacted my dancing. Instead of dancing for enjoyment I danced to burn off calories and wouldn’t miss a day so I wouldn’t miss out on burning calories. The enjoyment completely went and in the end my psychiatrist and my mum had to stop me from dancing, so I retired. Retiring is why I teach dance now. I always wanted to qualify as a dance teacher, but I didn’t expect it to be so young.
What is daily life like for you now you have your diagnosis and are at a healthier weight?
Now I have my diagnosis daily life is easier. It has helped my mum to better understand me so there are less arguments around mealtimes and the people that I feel necessary to know about it, know about it. Everyone who knows about it is supportive and understanding which makes me feel a lot more comfortable within myself. Being at a healthier weight is hard and I am still not where I need to be but that’s due to anorexia, not ARFID. I am getting there, and I am hopeful that soon I will be back at a healthy weight, but weight and body image is something I am still really struggling with which can make daily life in recovery hard. Although recovery does have its benefits because I don’t feel like passing out every two minutes – I have loads more energy to do the things I love and have the motivation to get out of bed so in that respect life is a lot better.
What are you proud of yourself for after going through these experiences?
I am proud that I never gave up, that I continued to keep going even when it was extremely hard. There were times that were extremely low and I believed it was too tough, it wouldn’t get better but it did.
After everything you have gone through, one thing I really admire about you is your determination to help other people. If someone suspects that they or someone they love has ARFID, what advice would you give them?
I would definitely advise them to reach out as it is hard enough to deal with, never mind deal with alone. It also can be very dangerous as your body is not getting all of the nutrients it needs so it is helpful to have a doctor’s input so that your body is getting looked after. I would also advise them to be as honest as they can about what they are experiencing to help people understand that they are not being stubborn or picky, they are genuinely experiencing extreme anxiety about food.
If you could sum up your outlook on life in one statement, what would it be?
‘Nothing worth having comes easy’. I am a strong believer in the idea that you cannot have success without hard work which I think shows in my day to day life where I often try to do the best that I can in every situation.
For more information on ARFID, head to https://www.nationaleatingdisorders.org/learn/by-eating-disorder/arfid