My 40-year battle with anorexia
Margaret Fish is currently recovering from anorexia, and here she shares her story
I have abused my body from the age of 17 to nearly 60 and done some awful things to it with anorexia, bulimia and laxative abuse. I didn't think at the time what damage it could do, and was doing over the years, but I have to try to live with it now.
I have lost most of my teeth and only have one kidney, and I get infections in that one, which means I can end up in hospital. I have osteoporosis as well as bladder incontinence and retention, and have to use a personal catheter at times. I have had prolapses of my bladder, vagina and bowel, and have ongoing bowel problems with constipation and/or incontinence. Three times in the past three years I have been in hospital and nearly not survived, which has been terrible for my family to have to go through.
I have missed out so much of my life because of anorexia and food being the focus of my day, every day, every hour.
At 18 I was admitted to a mental health unit, which did not specialise in eating disorders. I was just given drugs, which nearly killed me as they did not take into account my weight – then it was between four and four-and-a-half stone.
I did, finally, eat enough to come home, but had no further support. As my eating was being watched, I turned to bulimia. I’d never heard of that either. It spiralled out of control until I was taking hundreds of laxatives and bingeing in secret.
I married and wanted a family, but I had never had a period. I tried hormone tablets and luckily fell pregnant and had four children. Being pregnant was my happiest time as I could like my body and was determined to look after myself. However once I had finished breastfeeding, my eating problems would all come back to me.
First of many
In my late 30s, my marriage broke down and my new partner started asking me about my eating. I saw the first of many counsellors. They helped me to understand, but not solve the problem.
Around that time I had to stop making myself sick as my throat ripped and would bleed every time. It pushed me back to anorexia. By my 50s I could see that I had lost a lot of weight and that it was a problem. I thought that I could ‘just start to eat’ but of course I could not. I would insist I did not have anorexia as I did eat – I never accepted it as an illness but ‘just me’.
My life changed three years ago when, age 55, I met eating disorder nurse specialist Charlotte Long. It was the first time I had spoken to a specialist in anorexia. She understood how my head in relation to food and the physical eating disorder went together and that was the difference. Through her, I started to understand my problems better, but I was only seeing her once a week. I would leave her feeling very optimistic that I could change and a day or two later slip into my old routines.
Two years ago, the Lincolnshire eating disorder team started a day programme to give people like me extra support through one-to-one and group sessions. Participants also had to prepare and eat a meal and two snacks.
The first day there were five of us. We were told to take lunch together and we all sat in a big room with our bag, tearing a tiny bit of food off to try to eat, looking around to see who was watching and if they were eating something different or less. It was so hard.
I had never met anyone with anorexia before and after a while it was a relief. We all had different experiences – some had been in and out of inpatient units, we were age 16-60, some were married. But as soon as we started talking about food and how we felt about ourselves and eating we were all exactly the same. It was amazing.
We moved on to having food made at the programme or making it ourselves. There were a lot of tears and ups and downs. For example, dieticians would bring in vegetables and noodles and measure us a normal stir-fry portion. When we saw this mountain of noodles on the plate we all completely lost the plot. It was just so scary. The next week, when we had calmed down, we talked about it with the group so it was easier next time.
Over six months we went out to eat. You’re sat there and something completely different to what you are expecting comes and it is so big you just want to run. People would completely break down and have to leave. But one of the team would always find you to talk things through so you can look at it in a different way. Everyone was helping us through it, pushing us on and through the fear. And after about six weeks, it began to feel more like a group of friends just out for a nice lunch, which we could never have imagined happening.
I would not have got past those moments without people being there for me. The participants encourage each other, texting and calling through the week, and there is outreach on the days the programme is not running. It helps if you are having a really bad day. Nobody tells you to ‘just pull yourself together’. At last I have a group of people – my peers and nurses – who understand me.
I was eating a lot more and trying new things but still had the problem with the mirror – I was constantly looking in it to see if I was looking fatter. However, my mum died and I didn’t go to the programme for a month and I didn’t eat well.
When I went back to see Charlotte my weight had stayed the same, which set me right back, with a voice in my head telling me ‘you have to cut back more if you haven't lost weight’. If I felt I had eaten well and stuck to plan, and had then put weight on, I could rationalise and accept it more.
Until I accepted that if I wanted to gain weight and get rid of my anorexia for good and understood that my body and shape was going to change I was stuck in that cycle of fear. It hasn't been easy accepting the change, but was a turning point from me, and have built on that to get where I am today.
The programme has been great for people who have been in inpatient units – it is hard-going from having your meals organised to being out on your own so they relapse. Inpatient stays are especially hard for those with young children but with the day programme they can lead a normalish life and still get the help they need.
I wish I’d had the day programme when I was 18 years old. I just want other people to have a chance to live without anorexia – to have opportunities that I did not have. I tell the younger patients ‘don’t be like me and have it for 40 years before starting to get over it’. Because I have finally understood and accepted that I have an illness, and it's not ‘just me’.
I’ve learned that I am not going to put half a stone on if I eat something. In fact, I can’t believe the stuff I eat now. I am a healthy weight and have left the programme, but get ongoing support. I see Charlotte regularly and have help understanding a maintenance diet. Some days it seems hard and I still have my battles in my head, but the voices are getting quieter and everyday I email and text the friends I've met.
In time I hope to help the programme as a mentor for people starting their recovery. I want to give something back for what it has given me – my life back. A life I can now enjoy with my family and grandchildren.
Margaret Fish is currently recovering from anorexia and a former participant of the Anorexia Day Programme run by Lincolnshire Partnership NHS Foundation Trust