Nil by Mouth

Where to start? I have an issue with food, (I guess that’s a good starting point if I am to write a post about my eating disorder). In fact I have a huge issue with food. I’ve had an issue with food my entire life. As you may or may not be aware I am trying to lose some weight for my forthcoming wedding on August 25th 2012, and to help me do this I joined MyFitnessPal.com. It is a brilliant website, that also has a great iPhone app for people like me who want to lose weight, and track calorie intake. But It was my food diary that a lot of people took interest in because my diet was so limited. People would ask me why I just didn’t eat a wider range of food?

Whenever anyone asks me about poor diet, I don’t really know what to say. I have an eating disorder, which is more like a food phobia. I am scared of food, or to be more precise, I am scared of trying new food. Almost everything I eat, everything I ‘trust’, I’ve been eating since I was very little and I have never really ever strayed from these ‘safe’ foods. It is easier for me to list the things I do eat rather than the things I don’t it. If I had to make a sweeping statement on the things I don’t eat, it would be this;

“I don’t eat meat, fruit or vegetables.”

I don’t really know the cause of my eating disorder. Trying to find the answer is a bit like trying to find the killer in a “whodunit” murder/mystery. My family seem to point fingers at each other as to who is to blame. There are a few theories. One is it being down to me having cerebral palsy and due to this I was not able to suckle as a baby. Then there is a dramatic story of me being traumatised after being force-fed food when I was very young and having to eat my own vomit. Whatever the cause, my issue with food has affected my whole life.

Growing up with this phobia was difficult. I don’t think people realise how much they take food for granted. How it – food – has an impact on everything. During my school years my fear of food would cause me to panic about school trips, staying at friend’s houses for dinner, and I even remember having to miss out on my best friend’s birthday party because they held it at Pizza Hut. I couldn’t go out for the day unless I knew there was something I could eat when I got there. I just wouldn’t eat otherwise. This behaviour seemed to be socially acceptable as a child. One doctor told my mother that it would be something I would grow out of, but I never did. The older I got the more it affected me. I felt even more alienated then I did at school. I was embarrassed by my disorder. I never went out on dates, going out meant eating out and that was something I just didn’t do. I couldn’t travel. I couldn’t see the world, and because didn’t really eat anything I was also very underweight. I am 5′ 8″ and until I was about 25 years old, I weighed less than 8 stone (112lbs / 50.8kg). The below picture gives you an example as to how skinny I was.

Me (on the right) playing the bass guitar in 1999 when I weighed under 8 stone

It was around this time that I met a girl who didn’t try to change me but instead gave me options. For example she knew I liked cheese and she knew I ate plain pasta and asked if I ate macaroni cheese? For years I thought that macaroni was a vegetable and refused to eat it. I thought it was the same thing as cauliflower cheese. I had no idea that macaroni was pasta. She also introduced me to the plain cheese pizza. She phoned a take-away and asked for a margarita pizza without the tomato base. This was something I was too scared to do. What if they laughed at me? What if they ask why? What if they forget and it came with tomato? But she didn’t see my phobia as a problem, she would just help me work round it. She was great. She introduced me to more foods and because of her I put on a healthy weight, but I knew my diet wasn’t a healthy one.

My weight has been up and down ever since, and this normally depends on if I am in a relationship or not. I don’t really have a love for food, I hate cookery programs. I see food as more as a necessity rather than a pleasure. When I was single I would forget to eat, I don’t think I really register hunger. Buying food just seemed like a chore. I would buy food like bread. Forget to eat it. It would go mouldy. I would throw it away, and the cycle would start again. So I would then stop buying bread. I would stop buying milk. I would stop buying things that had a short ‘best before’ date. I started to get back into old habits, but now because I wasn’t as young as I was it started to affect my health. Different girls I dated had different ways of dealing with my disorder. One would try to trick me into eating things I didn’t like by hiding things in my food. This didn’t go down well at all. Some chose just to ignore it and let me eat what I wanted. Then when I was about 30 I had one girlfriend who was very militant about fixing my diet. She was tired of me saying that I would to get round to fixing my diet one day. She wanted me to fix it now.

I talked to my GP who referred me to a nutritionist. The nutritionist made me keep a food diary, but made it very clear that she wasn’t a therapist and could only advise me on my diet. I saw a therapist who tried CBT, but it didn’t get me anywere. I looked online trying to find help for people with eating disorders, but I couldn’t find anything that related to me. I wasn’t bulimic. I wasn’t anorexic. It was like no one else had the same issue as me. Then I found a web forum called http://www.fussy-eaters.com. The introduction to the forum reads:

We are an online community providing support and information for people with eating problems related to Selective Eating Disorder (SED) and Food Neophobia (fear of trying new foods).

I had finally found other people who had the same issues as me, and it was through this website that I was contacted by one of the producers of a program called Freaky Eaters. She sent me a set of questions for me to ask my friends and family about my food issues. She also asked me to make a small video diary of my eating habits, and to video myself trying new things, so thats what I did.

I sent them the videos, and the answers to their questionaires and they got back to me said they were interested in my story and would be in touch. I started to get my hopes up. I was finally going to be getting help. Real help. They started to interview my family, and friends, and then a few days later a camera crew arrived at my flat. It was now my turn to talk about my phobia. I was very nervous, but the woman interviewing me said I had nothing to worry about and she talked me through how it would work. This was just stage one. This was just the ‘getting to know me’ part. She would ask me a question and I would reply with that question and an answer. For example if she said; “What food do you like the most?” I would reply with “I think the food I like the most is..” etc. This was so they could remove the questions in the edit. The also filmed ‘cut aways’, which were just shots of my hands and eyes, and things they can use to edit my responses. They wanted me to talk a lot about pasta, the types of pasta I eat and how I just have it on its own or with cheese. No sauce. I became very aware that I was being pigeon-holed and that the name of my episode was probably going to be “Addicted to Pasta”. As things progressed I started to have concerns about how I was being portrayed on camera. I’m not addicted to pasta? I’m not a freak. I’m just someone who has an eating disorder, and one of the few foods I do eat is plain pasta. Then she asked me the question I dreaded the most. “What I thought caused my phobia?” I started to feel like I was on trial. They wanted me to point the finger. Point the finger on national TV as to who I thought was to blame for my condition. I started to worry about what my family had said on camera. Who did they blame? I answered the question the best I could. which is ‘I don’t really know what caused my phobia.’. She didn’t seem to be happy with that answer.

When the interview was over she opened a bag and brought out a carrot. She wanted to film me trying to eat it, raw. The camera focused on me. I couldn’t do it. She said this was brilliant. It shows I have a real issue. They wrapped up filming that day and said that they would be in touch about stage two. As soon as they had left I was on the phone to different members of the family with questions about what they had said to the film crew. Everyone was pointing fingers at each other. I got in touch with the producer and asked if I would see the program before it aired. If I had to give approval? She said that the first time I would see it was when it was broadcast. She told me that I had any worries and didn’t want to continue that it wasn’t too late to pull out. So I pulled out. I liked the idea of getting free help but was worried that the program might start a family feud. So that was the end of that.

Apart from getting over some of my anxieties, I haven’t made much progress since. I am too much of a stubborn person, but with my wedding fast approaching I have been thinking more about the future and how my diet is affecting my health. I also want to have children one day and I don’t want to pass my eating disorder on to them. I don’t want them to have the same problems as I do. I keep having visions of me trying to explain to a 3 year old child why they have to eat their vegetables but daddy doesn’t have to. Children learn by example and I wouldn’t be setting a good example for them, but I just don’t know where to go from here? In a way this is the first step. Admitting that I have a problem. Talking about it. Writing it down. I know it isn’t much, but it’s a start. It’s like being part of a help group.

*stands up*

“Hello everyone. My name is Russell, and I have a selective eating disorder”