This is my first post focusing specifically on eating disorder treatment. Having spent years believing both treatment and full recovery weren’t accessible to me, and having never spoken to others about their treatment stories, I’ve felt unsure about how common my experiences have been.
I’m still researching, speaking to other sufferers and recoverers and learning, but I feel ready to share my own treatment story and some of my basic ideas. From what I’ve learned so far, the delays and I’m not the only one to have received some damaging and triggering responses. But there are also examples of good, caring and sensitive practice too, even in my own disappointing treatment story. I hope these become more widespread as more people like me speak out.
Missed Opportunities – for Prevention and Support
The first time I tried to get help I was living on a university campus doing my master’s degree. I used to pass the campus surgery on my way to and from classes and often popped in to hurriedly weigh myself on the scales in a corner of the waiting room, hoping anyone who noticed me would think I was waiting for an appointment.
I was nearly two years into anorexia, aged 25 and without periods. At one of my secretive appointments with the scales, I decided to book an actual appointment, increasingly worried about not having periods.
On appointment day, I crept into the consultation room and blurted out that I was worried about not having periods and knew I wasn’t eating properly. I couldn’t fully articulate what was wrong, caught somewhere between denial, lack of understanding of my own condition, and shame. Instead of asking open questions and trying to help me articulate my problem, the GP simply said it was obvious why I didn’t have periods – I was underweight and needed to eat more. The end of my time slot.
A year later, I was living and working in London and my weight was going down again. I went to my local GP and this time I’d understood and started to process what was wrong. This time I was able to tell the GP that I had anorexia. My new GP was an example of the kind of best practice I hope we see more and more of. He was very sympathetic and kind, telling me I was brave for seeking help.
I was sent for blood tests and the results showed hormone levels close to zero. There followed a referral to mental health services and I had to go to what seemed like an interview to work out how mad I was. The interview was focused on suicide risk, and as I presented dressed for my corporate job and was not suicidal, not depressed in the sense of feeling hopeless, my follow-up letter suggested self-help DVDs. The end.
In the following years, I worked abroad and tried to ignore my problems. I didn’t get any worse, but didn’t get much better either. But like so many mental health conditions, it only took one traumatic experience to bring it to the fore again. I was the victim of a crime while working overseas, and the shocking experience along with my fight for my rights left me with what might have been diagnosed as PTSD.
Back in the UK, I saw a GP and was signed off work. This GP told me, ‘Yes, your BMI is lower now, so I’ll write you as anorexic’ – ie the lower you go, the more likely you’ll be helped and your mental pain recognised, a dangerous message which lingered in the back of my mind.
Following a further stint overseas and the ending of a difficult and damaging relationship, I returned to the UK with visibly deteriorated physical and mental health. This time my mum insisted on taking me to the GP and I gave in, too distressed to protest and deny this time. My mum persuaded the doctor to send me for a DEXA (bone density) scan, which showed I had osteopenia (pre-osteoporosis).
The response? ‘You could use a treadmill’ (with an anorexic BMI), and for dizziness from low blood pressure and low blood sugar, ‘You could take glucose tablets, and don’t stand up too fast.’ At least I was referred to eating disorders services for the first time, but when an appointment came months later, it was in a unit geared for teenagers and during working hours. I had a full-time hourly paid job. Therefore, no treatment.
Four missed opportunities to help me. I gave up and accepted that not being ‘anorexic enough’ to get help, I would continue to live with it. Recovery sounded like a dream – too scary to seriously contemplate, but something I wished I could just wake up one morning having achieved.
Entering the System
My experiences with GPs since entering treatment have also been mixed. I was lucky to have two very kind and supportive doctors when I staggered into the surgery back last January and they made the tough start a bit more bearable. But like many London renters, I move house often, so I’ve also encountered less enlightened approaches to my recovery.
The response that most shocked me was when I asked a locum GP for a repeat prescription to get the various nutritional supplements I’ve been recommended by eating disorders services. I got the reply, ‘I don’t think you really need all these…but even smokers get their quitting treatments on prescription, so if they deserve them, I guess you can have yours.’ ‘Deserve’ can be a dangerous word for eating disorder sufferers. There are so many worrying aspects of this comment, I don’t know where to start!
More recently, I’ve been troubled by the NHS ‘one size fits all approach’. This means asking everyone the same lifestyle questions no matter what their physical and mental condition is. When asked by a nurse whether I walked or cycled (a challenging activity with osteoporosis) and how fast I walked, I wanted to tell her the questions designed to give lifestyle advice for people at risk of obesity didn’t really apply to someone who was told less than a year ago not to move at all. Yes, I can walk around freely now and even pick up a pace, but I’m definitely not going to start counting my steps and measuring that pace. There lies madness!
Highlight the Good and Call Out the Bad
My fear of and disappointment at GPs’ responses was another reason I stopped trying to seek help in my late 20s. But this wasn’t a good approach as it just made my condition worse when I did eventually seek help again. I want others to keep trying, and to reach out to support organisations like Beat:
They can offer advice and support on seeking treatment and dealing with health services.
I think awareness has improved since my early 20s so I hope this means some of the responses I received are less common today. I want to add my voice to campaigns pushing for earlier referrals and become active on NHS services in my local area. Getting involved and speaking out allows us to feel ownership of our GP surgeries and empowers us to push harder for help, and not to accept any damaging responses.
I understand that some of the problems I encountered are down to NHS resourcing issues – a subject for another blog post. But some of my negative experiences are more easily fixed; they’re about doctors not being perceptive, open and sensitive enough, they’re about a sometimes complete lack of bedside manner. They’re also about the ‘one size fits all approach’ to health and lifestyle advice, rattling off the contents of the NHS Choices website no matter who’s sitting in from of them.
I wish I’d complained where I could and I’ve resolved to always do this from now on. I urge others to highlight and praise the good treatment they receive and to complain when they get poor responses. This might help to embed best practice and make seeking help feel less like a lottery. And what’s more, it’s empowering and might help your own recovery. It’s definitely helping me.
Tell Me Your GP Stories
I’d really like to know your experiences of visiting GPs about eating disorders. Please do comment below, send me an email through the contact form on my homepage, or contact me on Twitter. I’m thinking of ways I can push for change and would like to know how common my experiences are.