Nikki Grahame was Failed.
In 2009, whilst mindlessly roaming the streets of Halifax trying to kill time, I saw a book on the shelves of WHSmith. ‘Dying to be Thin: The True Story of My Battle Against Anorexia by Nikki Grahame’. Never had a title resonated with me so much. Aged 13, I had not yet been diagnosed with an eating disorder, but, in that moment, I already knew I would go on to risk my life in a fixation with the pursuit of thinness. I could see it coming. At school, they put up photos of emaciated models and warned us of how we would die if we starved our bodies. On This Morning there was a report about how a young woman had become so emaciated that she had suffered brain damage. I watched and I felt for her. But as far as my own safety was concerned, I really didn’t care. Like Nikki, I was quite literally ‘dying to be thin’ or perhaps rather, I was dying to feel in control, dying to fit in, dying to have a purpose, dying to succeed. Because in that society, weight loss was intrinsically tied to success. Through policy and publicity, everywhere I’d turned since I was a small child the two were tied together. Restrict your diet, exercise obsessively, mould your body, and you are a success. You are doing things ‘right’. And ‘right’ was all I’d ever wanted to be.
Fast forward 12 years: Nikki Grahame is dead and I am in recovery from anorexia. And I, like so many others with anorexia, am frightened.
Following Nikki’s tragic passing, messaging in the media has focussed on reaching out for support, with helplines being shared along with platitudes about not suffering in silence. The issue is, there’s no support there. Service waiting lists are now over two years long in some parts of the country, and even if you do manage to access them, often official NICE guidelines are simply not being followed. This is not because staff don’t want to work in this way, but rather they simply do not have the resources available to do so. Adult eating disorders are not even mentioned in the NHS long-term plan, with the focus regarding ED treatment being on early intervention through Child and Adolescent mental Health Services, but we need so much more than this. Both Nikki and I were treated as adolescents. Through no fault of our own, that wasn’t enough; we still needed support as adults but it simply was not there.
For a while, Nikki seemed to the public to have ‘recovered’. Now she is gone. Her death shows us how fragile recovery can be and for those of us with this illness, that is terrifying. This fragility is evidence of just how important it is that treatment and support for eating disorders is not time bound and offered exclusively within the first period of diagnosis. Yet currently it is.
Last month, I was discharged from NHS services because I’d completed a 40 session programme and it hadn’t worked, so that was it. It didn’t matter that I was nowhere near weight restored, or that I was crying that I didn’t feel I could go on, or that I was actively expressing the fear that I was going to end up dead left to my own devices. It was written in the manual that 40 sessions in a group should work, so that was that: nothing more could be done. Can you imagine turning to a cancer patient and saying that if one type of treatment hadn’t worked? Anorexia has the highest mortality rate of any mental illness, yet it seems that because it is psychiatric, that does not matter. We would not stand for this with physical illness, why are we doing this with a mental one?
My story is not unusual. When you have had anorexia for a long time, recovery becomes even harder and more frustrating. But the fact that people like me haven’t got there yet does not mean that we do not want to, it does not mean that we will not get there, and it certainly does not mean that we are not worthy of support. Now working with a private therapist and dietician, I am making more progress than I have in years. I am lucky. I have savings I can tap into and supportive parents who are helping me to access this (although this does not come without stress and financial concern). The majority of people don’t. They are being left to fight alone.
Nikki’s friends and family were having to fundraise to help her access treatment. Now she is dead. Nikki was failed. I am being failed. Thousands and thousands of people across the country are being failed every day by an inadequate and poorly funded system. I am angry and I am scared. Myself and so many others are crying out for change but nobody is listening. We need more and more voices to join us so that we cannot be ignored.
Nikki’s death has prompted many politicians to comment on eating disorders. They tweet about how ‘cruel’ anorexia is and how important it is for people to access treatment, sharing links to helplines. Yet it seems that the moment they press send, they forget about us again. Less than a week on, there are already reports that pub’s will have to put calorie counts on beer, wine and spirits. This is despite the fact that earlier this year, Beat expressed how harmful this kind of policy would be for people with eating disorders. Not only do we not have support from the state, it seems like they don’t mind sacrificing our wellbeing in the name of performative anti-obesity policy. We are simply collateral damage, worthy of comment when a tragedy such as the loss of Nikki happens.
Passing comments after tragic events are not enough. We need change and we need it now. Maybe with adequately funded, long term treatment pathways for those with enduring eating disorders, and consideration of our needs in other policy spheres, Nikki and the hundreds of others like her could have been saved. None of this had to be inevitable; anorexia shouldn’t be a death sentence, but too often it is.
It is too late for Nikki and my heart has broken. It doesn’t have to be too late for others, but those in power need to act now. There really is no time to wait; politics is being played with people’s lives.
If you would like to get involved with campaigning for change, please visit: https://www.endedcrisis.com/
For information about eating disorders, helplines, and support groups visit: https://www.beateatingdisorders.org.uk/
