Eating Disorders do not have “a look”

I was diagnosed with Atypical Anorexia at age 40. Nine months earlier I’d been sat with the GP for the first time, trying to explain I had “issues with food”. I don’t know whether it was a lack of clarity on my part (quite possibly, it was excruciatingly uncomfortable to articulate) or a lack of understanding/awareness on the doctor’s part, but I felt she hadn’t understood what I was trying to say; she sympathetically told me to self-refer for counselling. I wasn’t convinced but completed the online referral form.

I then spoke with a therapist who felt I was ‘complex’ and they referred me to an eating disorder specialist. I was horrified... I knew I had issues, but it wasn’t an eating disorder. The eating disorder service wouldn’t assess me because my BMI was “healthy”. I felt relief – “See!” the voice told me, “You’re not that bad” – the last thing I wanted was to see a specialist. The therapist put me on their waiting list for CBT. Months later she called for an update because I was still waiting; she felt I had deteriorated. I also saw a different doctor and at that point, I knew I was no better but in fact 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 what was going on. The doctor believed I had “strong traits of anorexia”. I was referred again to the eating disorder service and again, rejected for my BMI not being low enough.

The eating disorder voice 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, a failure. I 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 eating disorder services. I spiralled. I decided I needed to do it on my own but proved unable to do this. My partner’s support was amazing. He knew I needed professional help. We told my parents and had the psychiatric assessment.

I didn’t believe I deserved a diagnosis. 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 ED. It did, however, bring me some relief. For a short time I started to accept I had an illness and that I needed help. I had been recognised as somebody who had a condition which finally gave me some belief that I could now start to recover.

I’ve since learned that only a 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 teenagers. 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 believed it was within my control. Gradually I began to realise it was controlling me. Anything I ate would be compensated with restriction. Gym sessions began at 4am and could last hours. I’m very sociable but my social life took a hit. I couldn’t cope with socialising around food. It created a level of anxiety 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, easily, and for the second time in my life, slipped into the dark world of an eating disorder; a world that thrives off secrecy and lies.

Living with an eating disorder is like living with the devil. It is a bullying voice which overpowers every rational thought you might otherwise have had. It insists it knows what’s best, that you are right by following the rules and that everybody else is wrong. It tells you to only be satisfied when the scale hits a particular number. It lies. That number never becomes low enough, no matter how many times you change the boundaries. It’s happy when the number goes down, your clothes feel loose or you’ve had a super early and 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 longer than you did on the last session. It tells you you’re pathetic and 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 thoughts daily. 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. 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 loving partner; 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 them. I never felt suicidal, but there are times that I feel not living would be so much better than living with this.

I’ve learned a lot about mental health over the past 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 a 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 lucky. I’ve got a supportive family who have given me financial support to seek the help I clearly needed. Recovery is not linear: fact! I’ve learned 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 mean the next is good. Frequently, a run of good days will see my disorder panic and fight back, drawing me back in. Nobody sees this fight that is with you daily. Nobody hears the internal dialogue that taunts you constantly. Anorexia tells me I’m a failure; tells me that weight gain is 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 need to challenge those thoughts. If you are reading this and struggling with food which is impacting your life, then you have a right to recover and a right to be validated and supported.

I’m progressing but still have a long journey ahead. I work with a counsellor and dietician regularly. I know what I should eat, so for a long time fought the notion of working with a dietician. She’s made me work harder than I ever thought I needed, but deep down I know she is doing a good job. I’ve learned that I cannot run before I walk and no matter how frustrated I feel with the rate of my own recovery I need to be patient. I’m told I need to be compassionate with myself; I’m still trying to learn what this looks like! Fighting it is so exhausting.

I want to share my story to raise awareness of EDs 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