Anorexia: It Costs More Than An Arm And A Leg
Disclaimer: This article covers sensitive subjects which may not be suitable for certain audiences.
For just over a year I have been producing photography about anorexia, bulimia, and binge eating disorders. This is the beginning of a photographic body of work which I intend to exhibit. I have had an eating disorder since I was 17 years old, which for me has predominantly been anorexia. Shaneka from The Sociological Mail has given me the opportunity to tie these projects together and to share about my history with an eating disorder.
I can only speak from my own experience. I am not an expert in the field, and I am not medically trained, but I have a lot of knowledge about eating disorders. I think that it’s common for people with eating disorders to arm themselves with information, I most certainly have. The anorexic brain becomes distorted and narrowly focused. It does this because the brain isn’t getting the nourishment which it requires to function, and hormone production increases around hunger and appetite cues. Thoughts about food increase to the point of obsession, and for me this also includes a focus upon my eating disorder. I have spent hours of my life reading about anorexia from all sources, I do particularly enjoy peer reviewed research. There have been a few occasions when I have had to correct professionals who don’t know the correct information, or when they have tried to coerce me into doing things their way. The knowledge that I have gained has become a barrier to accepting treatment, and hand on heart, that’s why I spent those hours reading. It has been a brick wall that has kept anorexia and I within, defending ourselves against those who were assaulting us by trying to cajole, manipulate or compel me to eat. Ultimately the justifications that I have used have harmed me, because I have been compelled to have treatment under the Mental Health Act, against my wishes. My refusal to have treatment has damaged my body and my mind. The consideration of treatment, having to eat and recovery have filled me with fear.
Fear has been a recurring theme throughout my life, and I think that there is a link between my eating disorder and fear. I experienced a lot of trauma during my childhood, repeatedly and in many forms. I had a violent alcoholic step-father, and a mother that didn’t protect me or my siblings from his violence. Sadly Mum was also violent and emotionally abusive, and she was inconsistent, giving and withholding love. As a young child, I had to learn to read people, it was self-protection – “what do I need to do to stay safe today”. This hasn’t left me, and my body and mind are always alert to potential risk. Unfortunately, this even impacts upon my closest friendships. I was also abused sexually, and when I informed my mother and (the latest) step-father I was ignored. From early on I knew that it didn’t matter whether I did well or failed, I would be in trouble anyway.
I took an overdose when I was 17. I can’t tell you why because I don’t know. As soon as I had taken it I went to hospital because I hadn’t intended to do it. However, it was a turning point that led to the onset of my anorexia. My mum threw me out because I had overdosed and I couldn’t tell her why I had done so. I moved into a friends caravan and I started to unravel.
I had never heard of anorexia, bulimia or self-harm, but I started cutting myself and restricting calories. I would eat two slices of toast with mustard each day, and vomit as soon as I had eaten it. Surprisingly, I had no support from the mental health services for a couple of years, and it took until my early twenties to get diagnosed with anorexia – binge/purge subtype. By this point, I had so many difficulties that we didn’t get anywhere with my eating disorder, nor my other mental health issues. I had several hospital admissions because of suicidality and depression, and my eating disorder continued. There were short periods of rapid weight gain due to binging, which were then followed by rapid weight loss because of restricting.
When the opportunity came along for me to use amphetamine I did. By this point, I was aware that it speeds up the metabolism and reduces the desire to eat. It was successful on that level, but my mental health worsened with the development of intense paranoia. I started to distrust my friends and became so scared of them that I walked out of my flat, got a train halfway across the country, and ended up in a homeless hostel. Paranoia is a feature of my poor mental health, and I am sure that the amphetamine contributed towards its development.
I progressed from using amphetamine to heroin, which precipitated a further crisis, but one which meant I became ready and willing to take responsibility for, and the necessary action to change my life. When I got clean I knew that I had to eat because if I didn’t then I was unlikely to stay away from substances. So I started eating three meals a day. Gradually my portions increased, and I put on more weight than I needed to. I was fully aware that missing a meal was risk-taking behaviour, and I stuck solidly with the plan for 6 years. Although by now I had progressed to over-eating with regular binges. Then every now and again I would miss a meal. It really wasn’t a regular thing, to begin with, but over time those missed meals increased. I liked the sense of power, being able to overcome hunger by not eating. I experienced a strong feeling of being in control, so the number of meals that I missed increased. The period from when I started missing meals and back to intense anorexic behaviour took several years. But once I had started missing meals and experiencing the feeling of power and control that came with it, then it was inevitable that fully restrictive behaviour would ensue.
My wife and I separated, and I moved and found new employment. The work was intense, and I stopped having lunch. I didn’t eat breakfast by this point, and my evening meal consisted of a bread roll sliced in two, with half a tin of tuna on top of each piece, and sometimes with cheese on top (if I had the cheese it was toasted and lots of black pepper). I lost weight very quickly.
One meal a day went down to not eating at all. I mean nothing. I went 52 days with only fluids – I have to say I was fu)*i:g nuts at this point. I couldn’t think properly, my memory went, I couldn’t answer peoples questions because my brain had shut down. I guess it was preserving the essentials for survival and switching everything else off. Not eating for these kinds of long periods is both easy and hard. The obsession and compulsion to resist food is overwhelming and coupled with an obsession to buy and hide food, to write out recipes, watch all the tv cookery shows, and to cook for friends. I loved to smell food. At that point, just smelling food felt like it was filling me up.
The compulsion to not eat was what made not eating easy, I can’t explain what that’s like. Perhaps it’s similar to determination, but 100 times stronger. It’s a fixation, it doesn’t matter what you say to me, I will not eat. It doesn’t matter what I say to me, what I think, rationalisation – I WILL NOT EAT. My self-hatred increased over this period of “fasting” I didn’t try to fight it, just accepted that it was linked to not eating, and my self harm returned, but that’s OK because I’m not eating. With hindsight I can say that the more people tried to get me to eat, or put pressure on me too, the firmer my determination to not eat became. Again it’s that sense of control. My whole life felt out of control, except for the will that I had to not eat and to control the size of my body, and no matter how hard you tried, you could not take that away from me.
The worst experience was the self-hatred, shouting at myself, calling myself names, and the self-harm. I’ve self-harmed before, as a coping mechanism, and it’s been (for want of a better word) gentle. However, during this period I cut aggressively out of anger, rage, and hatred. I cut names into my legs and chunks out of my arms. When I look back on that time I have empathy for myself, I actually feel sorry for myself. How I treated and spoke to myself at that point was tragic, it brings a tear to my eye to think of it.
I was referred to a community mental health team and could attend their day centre. It was a safe space, daily occupation and it provided me with a connection with other people. I used the centre to help me get back into a pattern of eating, it was a slow process, and I was allowed to go at my own pace. They had no eating disorder training so they observed and encouraged but ultimately left me to sort out and manage my own recovery.
After not eating for so long the brain produces hormones to make you feel hungry, which is why there is often an obsession with food for many people with anorexia. For some of us, it also means that when you begin to eat again there can be an overwhelming urgency to do so, it certainly did for me. My food slowly increased and developed into compulsive overeating, and I put all the weight that I had lost back on, and more. It took six months to do so, and then I stopped eating again. Without effective treatment, the cycle continues.
My anorexia is
This period of not eating lead to me, once again, being sectioned under the Mental Health Act. I had stopped eating for 56 days at this point, and I had refused all of their offers of help, including meal replacement. I really did not believe that there was anything wrong with me at all. Thing is, I have other mental health problems as well as an eating disorder, and these include anxiety, paranoia and suicidal ideation. There are times when not eating reduces or stops these symptoms. Not always, but this was a time in which my I became symptom free, and that makes me feel well. Who would want to change if they were free from other overwhelming and disabling symptoms?
I was given the option of having meal replacement drinks and building up my calories or going into the medical hospital for nasogastric feeding. I chose the meal replacement. It really wasn’t easy, and in that hospital, I only got up to 900 calories a day. I then went to an eating disorders unit as an inpatient, which I found challenging, stressful and intrusive. I tried to want to be there, but having other people in control of the food which was going into my body was too difficult. I would argue with the dietician every time that we met up, was very hostile and resistant to treatment. They got my calories up, but I then asked if I could leave. I really don’t do well when others have control over me or my food, and I don’t do well as an inpatient in hospital. I never have. It makes it so hard for the professionals to work with me. I guess that’s why I am mid-forties and still sick and suffering from an eating disorder. Perhaps control is the issue rather than the food. Feeling out of control or that others are in charge of me induces intense fear, which leads me to feel like I have to escape.
Once they had discharged me I reduced my calories and started to purge every day. There was a community eating disorder therapist whom I was referred to. She was patient with me, and we developed a plan between us. I agreed to get to a minimum of 1200 calories per day. This was to be an initial target and is based upon the fact that with 1200 calories our organs can function. It’s the level that a patient would be given if they were in a coma. The other thing that she was very clear about was that I needed to have blood pressure, blood tests, and an ECG each week. If any of these indicated that I needed medical care, either as an inpatient or outpatient then I had to have it. It was made clear that if I didn’t comply then I would be detained under the Mental Health Act. She let me go at my own pace, and I slowly introduced solid foods to replace the drinks that I was on. I have to say that she was the best therapist that I have had for my eating disorder. She had boundaries and limits, explained these to me, and then worked with me as an individual. She understood how strong my control issues with regard to food were, and helped me to make progress. I got to 1500 calories per day, was eating solid food most of the time, and my physical health was improving.
Unfortunately, I got a sudden bout of depression and tried to kill myself. Whilst in the psychiatric hospital I started to binge. The staff on general psychiatric wards in the UK are generally not eating disorder trained, and they do not help a patient with anorexia to either eat or build up eating slowly. Having so much access to food after a long period of starvation sent those hormones wild again. The hunger was intense, and the amount of food that I would eat left me in pain all of the time. After eating the hospital dinner I would call up a take away, order a meal deal for two or three people, and sit and eat all of it. There was no real enjoyment of the food, just an insatiable appetite and an inability to stop eating once I had begun.
I find it so sad that I have been through all of this, and the harm that my poor body has had to cope with. Getting the right treatment for eating disorders in the UK does not always happen. I have no specialised eating disorder support at the moment, and this is a common issue for many sufferers. Part of it is the area that I live. In the UK each individual health authority decides how it is going to spend its budget, and which services it will commission. Here they funded one community eating disorder therapist to cover the whole county. She has changed role recently and hasn’t been replaced, and neither has the dietician who left last year.
So how did I get to this point on this occasion? My compulsive overeating following the last hospital admission led to me developing diabetes. I am terrified of the doctors and the hospital, so I looked into the research results from Newcastle University into reversing type two diabetes. They put their patients onto a very low calorie diet, which is medically supervised at all stages. The diet lasts for eight weeks, and then other foods are slowly introduced. The results are astounding. Type two diabetes can be reversed. Having reviewed the research results I decided that I would create my own very low calorie diet so that I could reverse my diabetes, which I have managed to do. However, the reduction in calories soon triggered the anorexic thoughts and behaviour, and I lost control.
Something was different this time though – my photography studies. I love photography and I love studying with the Open College of the Arts. My photography has developed considerably, and so has my contact with people. I can walk up to strangers on the street and ask if I can photograph them, and I have photographed at many events and around large groups of people. I feel safe with a camera in front of my face, and the whole experience is mindfulness in action. Its like I slow down, real slow, I look and see all that is around me, completely focused, present and in the moment. In January I returned to not eating anything at all. This time I went for 18 days. During that time my motivation to study disappeared and I became depressed. I couldn’t live with the impact it had on my photography so I began to eat again. Not a lot at all, but it was enough to make a difference. This has also been a time where not eating/severe restriction has had a positive impact on the reduction of other mental health symptoms. I haven’t had suicidal thoughts for some time, my anxiety has reduced, and so has the paranoia to a degree. I still get PTSD symptoms, but these are more manageable when my other symptoms are low. My energy increased significantly as well. Lack of food intake can mean that the body produces more adrenaline and cortisol, and this increases energy. To be honest it has been an absolutely amazing time that I have really enjoyed.
I haven’t really worked with my psychiatric team, and I have done the absolute minimum that I could get away with in order to stay out of hospital. I think that I have made it look like I am working with them and want to get well, but that hasn’t been my truth on the inside, until….
I went on holiday to London. It was to be a three week holiday so that I could be a tourist, make the most of the sights and scenes in London, go to galleries, museums, gardens and theatres. It was also an opportunity for me to meet up with my fellow students. Sadly, after just a week I became really ill. I felt dizzy, sick, and thought that I was going to pass out. I got to the point of not being able to function. My motivation to study and for photography went. Then a couple of weeks afterwards I was with a close friend, we had been out in his car for about an hour and we went for a coffee. My blood pressure dropped and I was unable to walk. These incidents frightened me into realising that I need recovery and I need it now.
Recently I have been making progress, and my photography has been an important part of that process, the enjoyment of photography is my motivation for change in a way that fear of dying from anorexia is not. I now know that if I do not make a drastic attempt to recover then I will suffer more serious health problems, be unable to take photos, and risk dying. Anorexia has the highest death rate as a proportion of sufferers than any other psychiatric disorder.
People can and do recover from eating disorders and anorexia. I was aware of the statistics about partial and full recovery, as well as those who never recover, but now I have started to attend an online peer support group for people with anorexia and bulimia I have met people, who I relate to, and who are in recovery. Meeting others who are no longer affected by the symptoms of their eating disorder gives me so much hope. Peer support isn’t the only thing that I need. Although I have a psychiatric and medical team, they are not eating disorder trained, and they have not replaced their dietitian or therapist. However, I have managed to find an experienced eating disorders therapist, who is also experienced in nutrition and diet. I grew up in a family of chefs, I know what a nutritious and balanced diet is, so why can’t I just do it? I am afraid of food, there are very few foods which I eat, I am obsessed with calories. I need help to overcome these difficulties, and I also need someone whom I can build up trust with so that they can manage my meal plan until I am able to put things into practice. I need to trust them to manage the calories for me. It’s a big part of letting go of controlling behaviour.
Eating disorders are not about food, even though the symptoms suggest that they are. Eating disorders are about control. By controlling my food intake, weight and body shape, I can avoid or suppress fear, feelings, circumstances and the uncertainties of life.
Yesterday was a very big step for me. I consider it to be the first day of my recovery. Most people with anorexia go through intense obsessions with foods, watching TV shows about foods, reading recipe books, cooking for others and not eating, and some of us hoard food. Over months I spent hundreds of pounds buying food that I had no intention of eating, and hiding around the house, even though I live alone. Before I could have friends visit I informed them that they were not to touch the hoarded food. Yesterday I sorted through it, binned what was out of date, and have bagged the rest for the local food-bank. A momentous step for me, and I promise you it wasn’t easy. I cried, I felt angry, and I needed to reach out for support. But I did it. I am proud of myself for doing so, so proud that I bought myself some flowers. I earned them (written three weeks ago).
I accept that this is not going to be an easy process and that it will take time. There will be times when my emotions feel too intense and overwhelming, and the regime of three meals and snacks is frightening. With help, I have introduced a couple of new foods, cereal, and jacket potato with tuna or chili. The rest are a few select foods that I feel safe with. There are times when I feel so out of control, which isn’t surprising. Change does mean letting go of the old control measures and trying the unfamiliar. The amount of emotion that I experience around the times that I am eating now has been surprising, and often very intense. But I want to study, I want to walk around and take photos, and I cannot have that without recovery. Recovery is possible, which I now know because I have found a community of recovering people.
If you have an eating disorder or think that you may do, and are not currently receiving support then please seek help. Your doctor is important because there are so many health complications with eating disorders. Perhaps you can talk to someone who you trust and ask them to go to the doctors with you. There are also eating disorders charities in many countries around the world. They can answer questions that you may have and provide you with information and support. There are also many peer support groups around the world as well. We all have to find our own way, but we never have to do this alone.
Thank You for reading and best wishes, Richard.
By Richard Keys
UK Based Eating Disorder Charities
Men and Boys Get Eating And Exercise Disorders Scotland
International Eating Disorder Charities
Peer Support groups
Anorexics and Bulimics Anonymous
Two vlogersI have found useful who are in recovery or recovered