Treating my Enduring Eating Disorder

There is a such a thing as a Severe and Enduring Eating Disorder (SEED). My own disorder as been severe at different points in my life, and has been heading towards another abyss for the last couple of years. It is certainly enduring – I’ve had this since I was 14.

This journal entry is far less about my research and everything to do with my own struggles, and I’m writing it partly prompted by recent events – and partly in response to World Mental Health Day. These experiences and opinions that I relate here do not represent the University of Bradford, my research participants, my GP, nor anyone else, for that matter. They are mine alone.

After a long period of therapy for bulimia nervosa that finally put an end to what was slowly but surely irreparably damaging me: my purging and so-called ‘compensatory behaviours’, I began my PhD and decided I would do the best I could on my own with my new diagnosis: binge-eating disorder (BED). I didn’t make it to the end of my doctoral research without needing help. That was OK, I had no problems at all about asking for help, I no longer experienced the stigma that prevents so many men from reaching out. And I could feel things worsening, so rather than doing what I did back in my twenties – leaving things until I was in crisis – I went straight to my doctor. This time, however, I faced a new, seemingly greater barrier (than my own will or perceived stigma).

No-one was able to help my GP to help me.

In December 2014, I visited my doctor and explained to him that my binge-eating was no longer in any sort of recovery; my attempts at sustained recovery were failing – in short, bingeing was once again beginning to control my entire personal life – only now I didn’t have purging to ‘counteract’ it. This was becoming even more dangerous because I was no longer experiencing the psychological distress alone. I now had a persistent, dry, profound cough that we discovered was due to damage to my oesophageal valves (the pyloric sphincter being one of them) as stomach acid & its vapours were, on a daily basis, making their way down my trachea and beginning to impair my respiratory tissue.

Let alone the dangers of oesophageal cancers if this continued, I couldn’t utter a sentence without coughing – bad news because I teach all day. So, now my ability to conduct my professional life was being affected. My doctor pinned all this down to the explosion of stomach acid being a response to the now out-of-control binge-eating. No longer were these excessive episodes once or twice per week – and my stomach couldn’t cope with being near-constantly ‘in use’.

Things happened in swift succession to diagnose these physical maladies: chest x-rays, appropriate medications, initial diagnoses, re-diagnoses. Indeed the rate at which things have happened, I’d have disagreed that the NHS was in crisis and was struggling to assess and treat people. The issue was that it turned out the media are really rather correct: when it comes to treating the mental problems that underpin and cause these physical symptoms it all fell apart. Our mental health services are an utter mess.

I’m not about to rant about our NHS in some random way – even though this would be deeply cathartic. There are 2 particular problems I wish to focus upon.

So, firstly let me say that each and every mental health professional I’ve been referred to has been respectful, clearly competent and attentive. I’ve never felt stigmatised, judged or unheard. They have dealt with me and my concerns appropriately; they have been clear and unequivocal.

And they have all asked the exact same set of questions.  And they have all told me that they cannot help. Indeed, I have now been assessed 5 times in (heading for) 3 years since my GP referred me. I have still yet to receive any treatment. I haven’t even been offered 6 weeks of CBT to symptom manage. Nothing.

In the meantime my life is getting worse and worse and worse. Some days I can’t contemplate leaving the house it’s so bad. Therefore:

  1. Why does Bradford PCT have no dedicated Eating Disorder services? How poorly conceived and neglectful of our Trust. I know I am not the only person struggling with an eating disorder in this region.
  2. Now here’s the main one. As if to make me that bit more poorly, every time I am invited to an assessment by a different psychological service I am asked carbon copy questions. I am made to relive the shaming depths of my personal horrors and pain. Don’t get me wrong – I do it willingly, because answering the questions fully and honestly allows the practitioner to assess my case more fully. But why am I constantly being asked to agree to the sharing of my sensitive data by the NHS, if Bradford is incapable of sharing my assessment with multiple services so they can ascertain whether they can offer treatment without putting me through this again and again. It’s degrading. There’s no dignity in it, no matter how empathetic the individuals are who do the questioning. Why cannot the GP request a formal assessment once, and this be used as the basis for service provision. If they asked different questions, I could understand it – but they don’t. I know that they don’t because I have actual, lived experience of the fact that the questions are the same. There has got to be better ways of assessing people for different services, treatments and therapies instead of putting them through this emotional distress every time.

Stop failing the people of Bradford who have psychological health issues, Bradford PCT, and get a grip of your systems and processes.

It’s bad enough having to wait nearly three years for treatment. But being made to go through multiple assessments only to be told at the end of each: ‘We can’t help you’ is NOT person-centred care. It’s like methodically trying to push someone towards the edge of their endurance whilst proclaiming an amateurish desire to help.

And what will happen once I reach the edge, I wonder? Like most flawed, fallible human beings who ask for help but don’t receive it – I’ll fall off.