Eating Disorders Do Not Have “A Look”

I was diagnosed with Atypical Anorexia one month before my 40th birthday. Nine months earlier I’d been sat in the doctor’s room for the first time, trying to explain that I had “issues with food”. I don’t know whether it was a lack of clarity on my part (quite possibly, as at that stage I found it excruciatingly uncomfortable to articulate) or a lack of understanding and awareness on the doctor’s part (undoubtedly), but I felt she hadn’t really understood what I was trying to tell her; she asked me very little.

She sat with her head sympathetically tilted to one side and handed me a leaflet for a counselling service and told me to self-refer. I wasn’t convinced but I filled out the online referral form before I lost my nerve. I had an assessment with a therapist who felt my needs were too complex for them and referred me to an eating disorder specialist. I was horrified. I knew I had “issues” but wasn’t ready to accept it was an eating disorder.

The ED service wouldn’t assess me because my BMI wasn’t low enough. At this point I felt mostly relief (“See!” my disorder told me, “you’re not that bad”). The last thing I wanted was to see a specialist. The therapist said I’d be put on their waiting list for high intensity CBT. Several months later she called me for an update because I still hadn’t been seen; she felt I had deteriorated. At the same time, I saw a different doctor; I knew I was no better but in fact getting worse. This time a friend came with me. I cried and shook throughout that appointment. My beautiful friend sat with me and helped me explain to the doctor exactly what was going on. The doctor believed I had “strong traits of anorexia”. The doctor and therapist both sent referrals to the ED service.

Again, I was rejected. BMI not low enough. (The ED spoke: “you’re not thin enough, you’ve failed at this”). The amount of weight loss, low body fat percentage, the fact I was engaging in dangerous compensatory behaviours, and the impact all of this was having on my mental health and daily life, meant nothing. I felt invalidated, worthless and a failure. I had put myself through the trauma of being open and honest with people I thought could help me but was now left with nothing; too “complex” for normal therapy but not “sick enough” for ED services. I spiralled. I eventually decided I just had to do it on my own but soon proved unable to do this.

My partner was amazing in his support of me. He really tried to understand and to help. Eventually he convinced me I needed professional help. I finally opened up to my parents and had an assessment with the psychiatrist who diagnosed me. For months I had fought the notion of any diagnosis as I didn’t want a label.

I also didn’t believe I deserved a diagnosis that was associated with emaciated teenage girls. I thought I wouldn’t be believed; that people would think I was making it up because I clearly didn’t look like I had an eating disorder. This time, however, it did bring me some relief. For a short time, I started to accept that I had an illness and that I needed help. The fact I had been recognised as somebody who had a recognisable condition finally gave me some belief that I could now start to recover. I’ve since learned that a really small percentage of people with anorexia are actually at that dangerously low weight.

Anorexia, atypical or not, is much more about what is going on within your mind. We need to challenge the perception that anorexia is purely about body image, or that we are “choosing” not to eat. We need to take our understanding beyond the stereotypical images and stories that the media portray. Anorexia does not just affect middle class white teenage girls. I am an adult. Restriction, purging, excessive exercise – it all became embedded in my daily life. I lived for the buzz and if I didn’t get it, I didn’t know who I was. I truly believed it was all within my control. Gradually I began to realise that it was controlling me.

Anything I ate would be compensated with restriction prior to the event or after. Gym sessions began at 4am and could last for several hours. I’m normally a very sociable person but my social life took a big hit. I just couldn’t cope with going out where food was going to be involved. It created a level of anxiety within me that I couldn’t fathom or rationalise. I would panic the moment I was around food, in fear of being offered something to eat. Soon it just became easier to avoid these situations whenever possible. I had, very easily and for the second time in my life, slipped into the dark world of an ED; a world that thrived off secrecy and lies.

Living with an eating disorder is like living with the devil constantly on your shoulder, bullying you. It is a loud voice which overpowers every rational thought you might otherwise have had. It makes you feel that it is the only one who cares, understands and knows what is right for you. It makes you feel you are making the right choice by following its rules and conditions and that everybody else is wrong. It tells you that you will only find peace and satisfaction when the scale hits a particular number. It’s all lies. The number never becomes low enough, no matter how many times you change the boundaries. It is so pleased with you when the number on the scale goes down, when your clothes feel loose or when you’ve had a super early and super challenging session in the gym. It looks you in the eye and pushes you to run harder. It tells you that you will be disappointed with yourself if you don’t run for longer than you did on the last session. It tells you you’re pathetic. It tells you to ignore the aches and pains. It tells you you’re useless if you don’t follow these rules and you’re lazy, unmotivated and undisciplined if you miss a day of exercise or eat something that you hadn’t planned to. It intrudes on your thought’s day in day out, and during the night too. It’s the last thing you think of at night and the first thing in the morning. It intrudes on your dreams when you’re asleep. It makes you constantly plan what you’re allowed to eat, what you’re not going to eat, and when you can look forward to a day when you know you don’t have to eat as much. It makes you lie. It makes you secretive. You become totally inflexible. It makes you angry and irritable. It is degrading and makes you do things that bring you relief and shame in equal measure. It’s constant, soul destroying, exhausting and relentless. It’s anorexia.

I have a lovely family. A supportive partner who I have caused no end of stress; we have two beautiful girls. Yet there have been times where I have desperately wanted to fully obey the voice of the disorder regardless of the impact on my family. I never actually felt suicidal, but there were times, before I started to get support and more recently, that I felt that not living would be so much better than living with this.

I’ve learned a lot about eating disorders and mental health over the past few years. I’ve learned that, sadly, my story is not uncommon. I’ve learned that you cannot tell by looking at somebody, whether they have an eating disorder or mental health condition. I have learned that the BMI scale is an outdated and inaccurate tool on so many levels; it does not take into account sex, race, muscle mass or bone density. It is so flawed, yet it continues to be a tool that many use to determine the overall health of an individual. Perhaps if my BMI hadn’t been used as the sole indicator of my health, I may have been given support earlier to prevent my disorder being allowed another year to gain a tighter hold of me. All research shows that early intervention is key to full recovery from an eating disorder. A person should not have to reach crisis point and near death to receive treatment.

I’m one of the lucky ones. I’ve got a supportive family with parents who have given me financial support to seek the help I clearly needed. Recovery is not linear and I have proved that many times. I have slips ups and blips along the way. I’ve learned that I cannot be complacent. I’ve learned that given any opportunity, the ED bullying voice will shout at me and sometimes I just don’t have the energy to fight back. Recovery is exhausting. You don’t just choose it once. You choose it again, and again, and again. One good day does not necessarily mean the next day will be good. Often for me, a run of good days will see my disorder panic and fight back, telling me I need to listen to it again. Nobody sees this fight that is with you daily. Nobody else hears the internal dialogue that taunts you constantly. Anorexia will tell me I’m a failure; it tells me that weight gain is something to fear and that if I gain weight than I have failed at the only thing I was ever good at – losing it. It’s taken me a long time to see that choosing recovery is the successful path and one that requires strength and determination.

I still feel I have less right to recover than someone with “proper” anorexia. I have a lot of work to do to challenge those thoughts. If you are reading this and struggling with issues around food that are impacting your daily life, then you have a right to recover and a right to be validated and supported.

I’ve come a long way but still have a long journey ahead. I work with a counsellor, dietician and recovery coach each week. I’m lucky. I’ve learned though, that the hard work must come from me. I have to take active steps in my own recovery, such as cutting out exercise altogether; I’ve even stopped wearing my watch because in the absence of the gym or running, I then became fixated on tracking my steps and walking everywhere. Together with my dietician I’m learning the importance of creating and following a meal plan. I’ve learned that I cannot make spontaneous decisions regarding food and, faced with too much choice, will end up choosing nothing. I’ve learned that I cannot run before I walk and no matter how frustrated I feel with the rate of my own recovery, slow and steady is actually the best way forward. I’m told I need to be compassionate with myself; I’m still trying to work out what this looks like! Fighting it is more exhausting than obeying it but right now I am feeling positive. I really hope I can keep going this time.

I want to share my story to raise awareness of eating disorders in adults and, in particular, people of a “healthy” weight. Anorexia and your health and happiness should not be determined by a number on any scale. I deserve and choose recovery. I want my life back and I don’t want to be a prisoner to it anymore. Anorexia is not my friend. Anorexia will not win!

Contributed by Helena