⚠️ T.W: Living with an Eating Disorder, by Andi
Tues, 27th February.
To continue from my post on our social media today (Tuesday 27 Feb) as a volunteer with Your Voice, Cornwall I am in the fortunate situation to be able to share the everyday battle I face with my own poor mental health and the eating disorder that is trying to kill me.
The sooner you reach out for help the greater the chance of full recovery. This is a fact that everyone involved in treating Eating Disorders is fully aware of.
Unfortunately for me and a lot of sufferers the actual start of treatment fails to follow this knowledge.
85% of people with Eating Disorders are NOT underweight and yet you need to be below a certain BMI to be referred for help. I don’t know the official NHS reason for this but I can only imagine its due to lack of staff and/or funding, which means not everyone can be referred. If we compare this model to physical illnesses it makes even less sense. Imagine having an open leg fracture but as it’s not infected it is decided that no treatment is needed, but told to come back when it’s infected, even though you are already unable to walk.
This is how people with Eating Disorders are treated daily.
As for myself I still remember clearly the day I went to my GP to ask for help. I had been struggling for almost a year with restricting food intake, counting calories and weight loss. Friends were worried about my weight loss and so I agreed it was time I asked for help. Unfortunately, the help I thought I would get wasn’t forthcoming. As I was overweight before my Eating Disorder even though I had lost weight my BMI was still in the healthy range. The problem with this is that Eating Disorders are manipulative, thrive in the dark and love to isolate you from friends and family. So when I was refused help that day the
Eating Disorder Monster in my head told me there was absolutely nothing wrong with me restricting and I could actually afford to restrict more and this is what happened. The ED Monster had completely got its grip into me, it was totally in
charge of my brain, after all it wasn’t being challenged at any point and had free rein to fully control me.
It was quite a few months later when I had lost a substantial amount of weight that I returned to the surgery. The friend that I was with broke down in tears in the consultation room and begged for help for me. I was so far into the grasp of the ED by now I no longer really felt that I had a problem. This turned out to be because my brain was so malnourished by the lack of food I had lost cognitive ability and could no longer see how serious this situation had got. I did know I wasn’t happy, was tired all the time, had no concentration but could no longer see the connection to lack of food. After all I was being told by the monster in my head that it was my only friend and everyone else was lying to me, along with continually shouting abuse at me for being fat and greedy if I wanted to eat an apple.
I did get a referral at this point but, it still wasn’t to the Eating Disorder Service. First of all I had to be referred to The Community Mental Health Team (CMHT) as they were the “gatekeepers” so this involved yet another delay, all the while I’m
getting sicker and sicker. I saw CMHT on New Year's Eve 2019.
I got my first appointment with the Eating Disorder Service (EDS) in February 2020 where I was told that my BMI was far too low for them to treat me and I needed to be in Treliske for nasogastric feeding (NG feeding) which involved a tube being put into my stomach via my nose and being fed for 20 hours a day for a week. This illness had suddenly got serious!
It’s obviously hard for me to write about my experience so I think that’s enough for today.
Please follow me tomorrow when I will continue my story.
If you need help please contact your GP sooner rather than later. DO NOT let my story put you off or give you an excuse not to reach out for help.
BEAT the eating disorder charity have lots of resources to help you approach your GP. They also have advice and support groups.
https://www.beateatingdisorders.org.uk/
EATING DISORDERS THRIVE IN THE DARK
To follow on from my social media post covering common myths around Eating Disorders I thought it might be useful to expand on these misconceptions further.
I guess I, myself, am not the typical person that first comes to mind when you think of someone with Anorexia. The reason being is actually two-fold.
Firstly, I am in my early 50s and secondly, I have actually only had anorexia for around 5 years.
Up until 5 years ago I was actually 'overweight' if anything and had never had problems around food before - although I had experienced severe mental health problems for about 20 years prior to this.
I will talk about how my Eating Disorder started in a future post.
I guess when you first think of someone who has an Eating Disorder - whether it be Anorexia or Bulimia - people automatically think of a young teenage girl who is just going through a phase = yes, there’s another myth. With that said, it could well be a phase, but in any case a change in eating habits needs to be taken seriously.
Other myths surrounding Eating Disorders are listed below. Please remember I am writing this from my own personal experiences. I will have common experiences with many other sufferers but our Eating Disorders are as different as our personalities are.
People with Anorexia:
- Don’t get hungry
THE TRUTH: I do get hungry but learn to ignore the signs. The longer the illness goes on for the brain switches off the hunger signals when it realises it is pointless because food rarely comes, and so it chooses to save that energy to keep the person alive by focusing on the vital organs.
This is one reason why its so important to get early treatment.
- Don’t like food
THE TRUTH: I absolutely love food! I have mentioned before that Eating Disorders aren’t actually about the food but what the restricting gives me in return. A feeling of control. The fact I love food so much is also me punishing myself because I feel as though I don’t deserve it.
- Don’t eat anything
THE TRUTH: This could be true at different times of the illness but other times it’s about restricting my portion sizes, only allowing myself to eat “safe food and allowing myself so many calories a day. When I was first out of the inpatient unit I was eating more and following my meal plan that I had been discharged with.
Unfortunately, the longer I have been home the more my old habits, calorie counting and restricting food have come back.
- Are underweight
THE TRUTH: 85% of people with Eating Disorders are in fact NOT underweight. This is for many reasons but it also depends on what Eating Disorder they are diagnosed with and like above, it depends on whereabout they are in the illness. Eating Disorders are clever and change over time.
- You can’t die from an Eating Disorder
THE TRUTH: Eating Disorders have the highest death rate of all the other mental health conditions! This is a combination of suicide as the person can no longer live under the “rules” the Eating Disorder imposes on every aspect of their life, and organ failure through malnutrition.
- Have incredible willpower
THE TRUTH: As Eating Disorders are not essentially about food, willpower has very little to do with the restricting we do. People have said to me in the past when they are trying to diet that they wish they had my 'willpower'. This is a lack of understanding of the illness.
Ask Me Anything
If you have any questions that you feel too awkward to ask a relative or friend who is living with Anorexia, please feel free to make contact with me using the form on the home page of this website and I'll do my best to answer them and hopefully this will help you to help them.
Mark your message for Andi and I can access it and treat it with confidence.
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