Interview: Coping with an Eating Disorder in Mind

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Niamh Allen, 24, speaks to Young Scot about her experience with anorexia and her work helping others as a Development Worker for an eating disorders project based at CAPS Independent Advocacy.

When did your eating disorder first begin?

My eating disorder first started when I was about 14 but I don’t think I realised I had a problem until a bit later than that. At first I was just trying to eat healthier and do more exercise but it got out of control very quickly, and I lost a lot of weight in one year. After that things continued to get worse and the eating disorder began to take over my life.

When were you diagnosed with an eating disorder?

When I went on a family holiday aged 15, my mum noticed how much weight I had lost and was really concerned. She said that as soon as we got back from the holiday we’d be making a doctor’s appointment. The doctor diagnosed me with Anorexia Nervosa and Depression, but even then I was still in denial.

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What happened after you had been diagnosed?

After being diagnosed my first hospital admission was just to a general psychiatric ward in Ireland, where we lived.  I feel that place just wasn’t suitable and I think that pushed me further into denial. When I was 17, I went to a specialist eating disorders unit just outside of London, but I was still very much in denial. I went through the motions, I didn’t really engage properly with the help, and I relapsed very quickly again after that.

When did you first recognise that you had an eating disorder?

It wasn’t until I moved up to Scotland and I was an in-patient in St John’s regional eating disorder unit, that I finally realised I needed to change. That was when I realised I couldn’t continue to live like that; not just that I couldn’t do this anymore, but that I didn’t want to.

What treatment has been most helpful for you?

Before I was admitted to St John’s I also got referred to an outpatient unit called ANITT, (Anorexia Nervosa Treatment Team) and have continued to get support from them after being discharged. It’s been their support and help which I’ve found the most useful because I could continue on with everyday life, while getting help and support. Hospital felt like a very false environment and I just couldn’t put what I was told in hospital into practice in real life.

What do you think was the root cause of your eating disorder?

From childhood, I didn’t really know how to express my emotions or cope with difficult feelings so I used an eating disorder as a way to cope. I think that’s a big misconception about eating disorders; a lot of the time people think it’s just about wanting to look thin and about food, but really it’s a way of coping with difficult emotions and negative feelings.

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What are some of the biggest challenges you’ve faced on your journey towards recovery?

I don’t know if there is an end point to recovery. I think life is constantly changing and there’s always going to be challenges, because life is so unpredictable and it’s not a linear process, there’s always going to be ups and downs.

What have been some of the most positive moments in your journey towards recovery?

Rediscovering things that I used to love. As a child I did a lot of horse riding, but when I was ill I had to stop because it wasn’t safe, and then I forgot about it because I got so caught up in the illness. I’ve started horse riding again in recent years and finding something that I really love, and being able to do it again, has given me a new lease of life. 

What are some of the everyday changes you have noticed since you’ve started to control your eating disorder?

For so long I was so isolated and constantly in treatment, but now through my job I have a lot more friends. Going to the cinema, is something which for years I wouldn’t have been able to do because I couldn’t have sat down for that length of time without feeling like I had to exercise.  Really, just being able to do simple things again, like going to a coffee shop - that is not a very big achievement for a lot of people but for me it’s something that I’m really enjoying.

How do you stop the eating disorder from taking over your life again?

It is still a daily battle, and I still have to make conscious choices every day. What helps a lot is having passions which I know I can only enjoy if I stay healthy. Every time I go out horse riding it gives me the inspiration to keep going, so I always keep that in my head. It’s still really difficult, it’s still constant challenges, but I’ve found there’s more benefit to going out and doing things than being stuck in the eating disorder. 

How did you get involved working with CAPS?

I was still undergoing treatment when I started with CAPS, back in June 2013. I originally started as a volunteer and I was in a completely different place - the work has helped me towards the recovery process. The first project I worked on was a film, ‘Seen But Not Heard’ which follows the stories of seven different people with eating disorders. 

It was funded by the Butterfly Bursary, a grant set up by NHS Lothian and the Wedell family whose daughter sadly died of an anorexia. After the success of the film, CAPS were able to employ myself and another volunteer permanently, and we started taking the film into high schools and universities to raise awareness of eating disorders. I also work on a project funded by See Me, which involves those with lived experience of an eating disorder creating a resource pack for GPs.

How does helping others with eating disorders make you feel?

It’s difficult at times but very rewarding. Sometimes it feels like we can speak to 100 students and if it’s even made an impact to just one of them, then it’s worth it. We did get an email from a student saying, ‘thank you, that’s really made a difference’, and that was one of those moments that almost made me cry.

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What advice would you give to a young person currently experiencing an eating disorder?

Talk to someone, it wasn’t until I started to speak to people and be honest that I faced up to my eating disorder. Once I was able to talk about my eating disorder, that was when I realised that I could change things, and hearing from other people who had felt in a similar situation to me and were now in a much better place was inspiring.  

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