Eating Disorders Awareness Week 2014

This week (24^th February – 2^nd March) is Eating Disorders Awareness Week. I’ve been wanting to do a blog post about eating disorders for a while, but have been quite nervous to do it because I want to make sure I get it right, as it’s such an important and sensitive issue to talk about. So, this week seemed like the perfect opportunity to give it a go. As well as being Eating Disorders Awareness Week, it is also Beat's 25^th Anniversary. If you haven’t heard of Beat, they are the UK’s leading eating disorder charity, providing support and resources to anyone affected by eating disorders – be it sufferers themselves, friends, families and schools.

Beat has been an invaluable source of support to me, as well as millions of others. They provide two separate help lines – one for adults and the other for young people, a UK wide network of self help and support groups and online support including information, message boards and live chat. As well as this they provide expert knowledge, education and training to health and social care professionals and support and encourage research into eating disorders.

Over 1.6 million men and women in the UK are affected by eating disorders, and they have the highest mortality rate of any mental illness, at approximately 20%. This is one reason why I believe raising awareness and understanding is so important – treatment needs improving and more research is essential in the quest to finally beating eating disorders once and for all.

The strap-line for this year’s awareness week is ‘Sock it to Eating Disorders!’ You can read about where the inspiration for Sock it to Eating Disorders came from here. I thought it might help to briefly (or probably not so briefly, I’m afraid!) tell my story, to explain why I am so passionate about raising awareness and fundraising for this cause.

My story

For as far back as I can remember I have had issues around food, my body and self-esteem. I can’t remember a time when I felt comfortable with who I was, and even as a young child I would go through phases of ‘healthy eating,’ where I would make very specific rules about what I could/couldn’t eat, how much water I needed to drink and what exercise I should be doing. This never really became a problem – I just seemed to be a child who was interested in nutrition and food, and it didn’t affect my day-to-day life too much. When I was in Junior School I began to get bullied (mainly by one boy) about my weight, and from then on I became transfixed on how big I was compared to others. I thought more about what I was eating and began to get more self-conscious about the clothes I wore and the activities I took part in. I spent a lot of my spare time dancing, which I absolutely loved, but as I grew more and more uncomfortable with my body I enjoyed the dancing less and less.

Things began to really snowball when I was diagnosed with M.E/CFS at 15. I was having digestive problems, could barely get out of bed because I felt so exhausted and was in constant pain. Consequently I spent quite a long time struggling to eat an awful lot, which resulted in me losing a lot of weight (unintentionally at the time). People started to comment on my weight loss – to start with they were quite positive comments, which I’d never heard before and gave me quite a boost in my self-esteem. My GP had asked my Mum to weigh me every day and keep a record of what my weight was doing (I feel that this was a big mistake as it made me even more preoccupied with my weight). I soon started to get a bit of a ‘buzz’ whenever my weight decreased, and before I knew it I was sucked into the grips of an eating disorder. Alongside this my mood had seriously deteriorated, possibly caused by my poor physical health, although I believe there were probably a whole mixture of reasons for it. Eventually I was diagnosed with clinical depression, referred to CAMHS, had regular sessions with a psychiatrist and was tried on a whole variety of anti-depressants.

This continued for a year or so, with my physical health getting no better (leading me to missing large chunks of school, completely losing my social life and a lot of my friends, and having to cut down the amount of GCSEs I could take to 7). My mental health continued to decline – my weight continued to decrease, I was regularly self-harming and took several overdoses. However, my diagnosis was still just Clinical Depression, and as much as my parents fought for them to recognise I had an eating disorder, they were having none of it. Eventually, in 2005, just as I was meant to start college, I was admitted to an Adolescent Psychiatric Unit in Winchester, to give me somewhere that could keep me safe and hopefully help improve my mood. I can still remember clearly the day I was admitted and my Mum and Dad having to leave me there, not really knowing much about what would happen next. Over the next couple of months I was left to my own devices when it came to eating (or rather not eating in my case) and my mood got worse rather than better. Visitors were only allowed on Wednesday evenings, and depending on your state of mind you could be granted weekend leave. I hated it – I felt like they didn’t understand me and every evening I would ring my parents in tears, begging them to come and get me. This particular unit specialised in treating eating disorders, and it used to really get to me seeing the other young people getting help for their eating disorders, while I was being left to struggle on my own with mine.

Finally, after a few months of being there, we had a big meeting with my parents and care team, and my Psychiatrist said that after observing me it was clear that I did have an eating disorder. I was diagnosed with EDNOS (Eating Disorder Not Otherwise Specified) and placed on the eating disorder programme. It wasn’t easy at all – sitting at a table being constantly watched while you eat, not being allowed to be on your own after meals, no exercise and so on, but it was the best thing to happen to me – I finally felt that someone understood me. I made some amazing friends in that unit, a lot of whom I still speak to today, and after 7 and ½ months I was discharged back home with a healthy BMI. It was pretty tricky at first and I actually really missed the Unit – it had become my home, my safe haven where I didn’t have to deal with the outside world. I was now seeing an eating disorder nurse weekly in the community, and struggled for quite a while to maintain my weight and stay on track. However, over time things got a bit easier. I started back at college, doing a course I loved, made some new friends and actually had a bit of a social life again! I had even applied to go to University in Portsmouth. The next few years I stayed fairly stable, and when I went off to University I was discharged from all mental health services.

Unfortunately, I only lasted a few months at University before I started getting ill again. My physical health was declining, my depression dipped rather suddenly and I was aware my weight was starting to spiral again. But this time I managed to catch myself before I fell too hard. I decided to leave Uni, go back home and get my health back on track, which is what I did. I began studying Psychology with the Open University and working part-time at a local Secondary School. Things were good, the best they had ever been, for a few years.

Then came 2012 – the year everything started going wrong again. In the February I was sent home from work feeling really poorly – I had, what I thought, was a stomach bug, but it just didn’t go away. Everything I was eating just seemed to go through me, I was exhausted all the time, the pain was coming back and I just felt generally awful. I had the usual blood tests, which didn’t give any clue as to what was wrong. Eventually I was referred to a gastroenterologist, who booked me in for an OGD and colonoscopy, which she wanted done ASAP. But my notes got lost, and it took until July before I eventually had the tests. I was very unwell afterwards, and ended up back in A&E, spending a week in hospital trying to stabilise me. They sent me home feeling worse than when I came in – by this time I had lost a lot of weight and was incredibly weak. After finally being able to see the consultant again, she decided to admit me the next day to be tube fed. Up until this point I was convinced my problems were purely physical, but once I had the NG tube and began putting on a bit of weight, I realised that my eating disorder had also come back with a vengeance. I was tube fed for about 6 weeks and managed to put on a small amount of weight, which they did further tests. The only conclusion they could reach was that I had a problem with the way my nerves in my intestines work, so they don’t transport food properly through the bowel. The tube was removed, despite me begging them not to – I hadn’t eaten anything for over 6 weeks and I told them my head was in a very bad place. Still, the tube came out and I pretty much lost the plot. I don’t remember much about the next few weeks – only that I had refused to eat or drink for over a week.

The eating disorder service was contacted, but I was told I wasn’t underweight enough to access inpatient treatment, and I wouldn’t be accepted for day treatment because I was too unwell. I’ve never felt so scared and stuck – if I couldn’t have either treatment, what was I meant to do? The hospital were trying to discharge me home, but my parents refused to take me, on the grounds that in less than 24 hours they would be calling an ambulance when I collapsed from dehydration and malnutrition. I’m definitely not proud of what happened next, but I’ve also learnt that I shouldn’t be ashamed either – it got to the point where I had to be sectioned and transferred to a general psychiatric hospital, who had very little understanding of eating disorders. Thankfully, this was enough to shock me into at least starting to drink water again. If I hadn’t done that, I honestly don’t know what would have happened to me. Very gradually, with the help of an amazing psychiatrist and some very understanding nurses, I began to eat again. Not a lot I have to add – literally a couple of mouthfuls a day, but it was a start. My medication was reviewed and as I got a little bit stronger I was referred back to the eating disorder service, although I still wasn’t well enough to receive help with them for another few weeks.

Finally, I was re-diagnosed with Atypical Anorexia, Clinical Depression and Borderline Personality Disorder and became a day patient in November 2012. It’s got to be one of the hardest things I’ve ever had to do, but I continued to attend until my BMI was in the health range again, and was discharged to outpatient care in April 2013. I still saw my psychologist weekly but could not maintain my weight. They eventually decided there was nothing else they could do for me, because I wasn’t maintaining my weight, and I was discharged from the eating disorder service in January 2014. That brings us up to where I am today – still fighting every day to be well, just without the help of the eating disorder service. I have a CPN, who is really trying to do all she can to help, but I do feel let down by the eating disorder service. They got me to a healthy weight and then basically let me go, which I feel is so wrong. Eating Disorders are a mental illness – weight is only a physical symptom of the inner turmoil, so simply restoring a person’s weight does not mean they are cured. I’m going to keep fighting though, even if I have to do it on my own. I’ve been fighting for 10 years – I’m not going to stop now.

*I just want to add a disclaimer – this is all my own opinion and shouldn’t be taken as medical advice. If you are concerned that you, or someone you know, may have an eating disorder, please speak to your GP or contact Beat for advice.

Do you have any experience of eating disorders, either yourself or someone close to you? Are there any questions about eating disorders that you would like answering?