Eating Disorders Awareness Week – what is it like living with one?

This year’s Eating Disorders Awareness Week runs from 26th February to 4th March and it will be the sixth such week to pass since my daughter became ill with anorexia and depression. The headlines will tell you that eating disorders are estimated to affect 1.6 million people in the UK and have the highest mortality rates among psychiatric disorders. But what is it like living with one?

Trying to condense our experiences into one blog is quite a daunting task – if I had the time I could write thousands of words but that would be too lengthy an account and there are some things I could not bear to revisit. So, where to start? Firstly, I think there was a lot of shock. The shock of the diagnosis, the seriousness of the illness and the speed in which anorexia overwhelmed my daughter was truly shocking. It was not just the loss of weight, I watched her totally unravel in a matter of weeks. My daughter did not look like my daughter; she did not speak like my daughter or think, feel or behave like my daughter. It was like our happy child had disappeared and all we were left with was an angry negative replica.

As a parent or carer there is a great need to know why your child or loved one is ill. You logically think that if only you knew what caused the eating disorder you could do something to resolve it. There are many views on this – media influences, bullying and peer pressure, family stresses from illness, divorce and moving home. Parents and carers can experience a lot of guilt, what did we do wrong? And anger or frustration – why has this happened to us? There can be a lot of conflict as anorexia uses this to stop the sufferer from eating. So lots of arguments around meal times and this in turn can make carers feel very helpless.

A very helpful Consultant told us that if a person has a genetic vulnerability for an eating disorder, losing weight for any reason can be enough to trigger the illness. Anyone can develop an eating disorder: men and women of all ages and backgrounds. My advice to carers is to try not to feel guilty or take any blame for the eating disorder, instead know your enemy – by finding out as much as possible about the illness you will be better able to support your loved one.

The second point I would like to make about anorexia is how expensive it is and the financial strain it can put upon families. During 2013 I was spending £100 a month on blueberries and grapes. With a small square of frozen white fish and broccoli this was pretty much my daughter’s main diet. If you speak to carers about what their loved one eats you will usually find some sort of expensive ‘superfood’. Blueberries, mangos, papayer, and asparagus are usually somewhere on the list. I believe that my daughter felt she could allow some ‘healthy’ foods, and as the frantic carer trying to get some food intake daily, you end up doing whatever it takes. One night I drove around at 11pm looking for a certain brand of nuts because she had said she might be able to eat a few.

There is also the expense of attending months or years of outpatient appointments. You may have to drive quite a distance so fuel, parking charges and possibly loss of earnings for time off work. When my daughter was hospitalised for four months the hospital was 55 miles from home that was 110 mile round trip, daily to start with. Sometimes outpatient buildings have no car parking so you may be faced with two people needing half a day off work when the patient is too frail to walk very far, one to escort the patient into the building while the other person drives off to park the car.

Of course, the largest expense of all is probably loss of earnings. I was lucky that my daughter’s school were able to supervise and help her eat her lunch for the two days a week that I worked. The other three days I had to drive to the school every lunch time and sit with her as I did for every meal she ate. I was able to keep my part time job but that is not always possible. Sometimes carers have to take extended periods of unpaid leave or give up work entirely. Unfortunately there is no quick fix for eating disorders and as recovery can take years so loss of earnings can have a devastating impact.

My daughter has been treated by both the Children’s and Adult Mental Health Services and six years on I realise that we were very lucky that she was aged 14 when she first became ill. This brings me on to my third point of accessing services. So, you have a family member who is seriously ill and naturally you think they will receive the treatment they need. This is not always the case and now you are faced with two battles. The battle of getting through each day with an eating disorder, and the battle of accessing treatment.

Whilst my daughter was under 18 we had a good service from what was then the CAMHS Eating Disorder team. Currently in Essex eating disorders in the under 18s are treated by the Emotional Wellbeing and Mental Health Service (EWMHS).

My daughter started to ‘recover’ from her anorexia at the age of 17 and we received good support up to her discharge after her 18th Birthday. She had transitioned to the adult services as she was on medication for depression which was still a problem. The contrast between the children’s and adult services was stark. With the children’s service as parents we were totally included and consulted, with the adult service we were totally excluded. My daughter was deemed not ill enough to receive any counselling for her depression and was put on two different types of medication and into a ‘review’ group of patients. This meant she had no access to any type of counselling or psychological therapy and would be given about three appointments a year to review her medication.

For a year my daughter did very well with keeping a normal weight but struggled with her low moods and her depression never improved. Then she caught flu and could not eat properly for two weeks and this was enough to trigger the anorexia again.

The thresholds for adults to access treatment are often set so high that the patient has to be extremely ill before they are offered anything. The problem with anorexia is that the longer the patient is ill, the more their thinking and behaviour changes and the harder it is to pull them back. Patients can spend years going into crisis, being hospitalised (at great expense), going back into the community without proper support and left to struggle until they hit crisis again. For the last couple of months my daughter has only been given an outpatients appointment every 4 weeks despite the fact that her weight is continuing to go down.

I became a Mental Health Ambassador for Healthwatch Essex because I was completely fed up with the poor service offered to some adult patients (all types of mental illness) in our county. With the other Ambassadors I have been able to offer ‘lived experience’ to help the Commissioners from the Clinical Commissioning Groups and Councils to co-produce the new Essex Mental Health and Wellbeing Strategy. It has been good to know that service users are being listened to and to see items in the strategy that were raised and discussed by us. We are continuing to work with Commissioners and hope eventually to see the strategy turned into a much improved service for Essex patients.

For information and support for parents/carers looking after someone with an eating disorder the following websites may be helpful:


The New Maudsley Approach

Jackie – Healthwatch Essex Mental Health Ambassador