Why eating disorder training for doctors is so important: a patient’s perspective
As I type this, Eating Disorder Awareness Week has not even started. Yet there are already arguments on social media about this year’s campaign, which aims to increase training on eating disorders in medical schools.
It is not my intention here to contribute to the arguments or criticise medical professionals. But I want to raise awareness of the impact training can have on patients with diagnosed or undiagnosed eating disorders, both positive and negative.
These are some of my personal experiences of medical appointments as an ob**e adult female with Binge Eating Disorder.
GP appointment, mid noughties. I told him that I was struggling with eating. I couldn’t seem to stop, I felt out of control, and my weight was increasing. He gave me a diet/healthy eating leaflet, and recommended I join a gym. I tried to explain that I had dieted before and knew what to eat – I had even studied nutrition at school. He told me to try again and cut out sugary snacks.
Impact: I avoided the doctor and didn’t raise the issue again for years.
GP appointment, 2014. I spoke about how I had struggled with food for a long time, and couldn’t stop once I started eating sometimes. I told him how much weight I had lost on anti-depressants. He asked me questions and told me he thought I had Binge Eating Disorder. He referred me to the local Eating Disorders Service.
Impact: I received 2 years of specialist treatment, which started my recovery process.
Rheumatology appointment, 2019. The nurse took me into a room and told me to sit down so she can take my blood pressure. I didn’t realise that I was being asked to sit on a scale, and the nurse did not ask for my consent to weigh me. She asked me if I wanted to know my weight. I disclosed my eating disorder and asked not to be informed of my weight as this could be harmful. She noted this on my chart.
A few weeks later I received a letter from the consultant. It included my weight, and I realised that I had gained more than I realised. It also indirectly blamed my joint issues on that weight.
Impact: a relapse, with regular binges, which lasted for several months.
Follow up appointment, 2019. I let the nurse know what happened and declined to be weighed. She apologised and said she had not realised it would be in the letter. The rheumatologist made multiple comments indicating I should lose weight. I disclosed my eating disorder again. He made no comment.
I left the hospital in tears. I called the department to complain and requested a different consultant. I was told my case would be transferred.
Impact: I spent a further two years without treatment and in pain. My bingeing continued, although I continued to work towards recovery.
Telephone GP appointment, 2021, because I hadn’t heard from the hospital. I explained the story to the GP. She offered to refer me to another hospital, and took the time to ask how I was managing my eating disorder symptoms due to the pandemic, because this was a difficult time emotionally. We discussed my coping and support mechanisms and she told me to call if my symptoms worsened.
Impact: I felt heard, supported, and able to trust the GP.
Nurse appointment, 2021. A few months later I discovered I was eligible for the vaccine due to my BMI, so I called my GP Practice. I was told I needed to be weighed. I went in to see the nurse. I disclosed my eating disorder and she made sure that I couldn’t see my weight. She took the time to check I was managing and tell me how well I was doing during lockdown. When I asked what my BMI is, she didn’t tell, me, saying she would work out what it was after I left.
Impact: I felt supported and reassured that I would not be judged if I relapse, or for my body size.
Hospital appointment with a new rheumatologist, 2021. I was not weighed and treated in a weight neutral way. He offered me pain medication. The tests he referred me for showed that the previous rheumatologist had diagnosed me incorrectly.
Impact: no relapse and reduced pain due to the medication.
You may have noticed that I disclosed my eating disorder, or eating disorder behaviours, at every one of these appointments. Over the years, I have learned to make a point of disclosing. It is the quickest way for me to find out if I am in a safe space. And by this, I mean that it tells me whether the medical professional has received training in ED. Because that training ensures that my health, and not my size, becomes the primary focus. Because weight stigma is real, and it can trigger a relapse.
You will also see that the majority of experiences I have had were positive. There are many, many understanding healthcare professionals out there. But those two or three negative experiences had far-reaching and long-lasting impacts on my overall health. And they have left me feeling the need to protect myself and my mental health every time I visit a new healthcare professional.
This is why I stand behind BEAT’s campaign this Eating Disorders Awareness Week. Because if one more person is diagnosed before their ED becomes chronic, if one less person relapses because of a doctor’s thoughtless comments, I will consider it a success.
I waited over 30 years for a diagnosis. Recovery has taken 8 years. I don’t want anyone else to have to endure that. Increased training in medical school will help ensure that no-one will.
So please consider supporting this year’s campaign. Go to BEAT’s website and sign the petition. Follow the campaign on social media. Let’s make every medical appointment positive for people with ED.
The thing about recovery, and stopping eating disorder behaviours, is that it brings stuff up. It leads you to re-evaluate your life, the life lived in the shadow of an eating disorder. It makes you question everything, especially if you had an ED for a long time, like me. How much was my life shaped by my ED? Who am I without it? Who do I want to be?
And with Valentine’s Day approaching, my thoughts turned to love and relationships.
I have spent my life “failing” at love. Everyone round me encouraging me to couple up, find a partner. But feeling uncomfortable about it, being fiercely independent. Struggling and often unhappy when I was in a relationship, but not really knowing why.
So, I went back to the beginning and started looking for the reason.
If I’m honest, I didn’t have much in the way of good examples when it came to relationships. I would describe my parents’ marriage as tempestuous. I never really saw my grandparents together, and my aunts, who I saw a lot, were both widowed.
Photo by Berendey_Ivanov / Andrey_Kobysnyn on Pexels.com
I escaped into books as a child, into wondrous alternative realities. When I was reading, the world around me didn’t exist. But those books and fairy tales fed me lies about love and romance, about knights in shining armour coming to girls’ rescue, about love at first sight, great romances. And crucially, they didn’t say what happened next.
I had no idea how relationships worked. But I knew I didn’t want one that involved a lot of fighting. So I went along with what my partner wanted. I stopped having opinions, I “put up and shut up”, and in the process, in each of my relationships, I lost who I was. If I even knew who I was in the first place.
Because what else could I do? Let the guy get to know the real me? The greedy fat pig who binged every time their back was turned? That would have been a disaster. No way was I going to let that happen.
There’s an awful lot of talk these days about loving yourself. It’s mooted a lot in the body positivity community. It’s not a concept I grew up with, and as far as I’m concerned, it’s a big ask when we’re surrounded by constant messages telling us we’re not good enough unless we buy product x or y.
I’ve never loved myself, and I doubt I ever will. Love is a strong word. I accept myself as I am now. Most of the time I like myself, but love? No, not really. But I don’t see that as a major obstacle. It hasn’t prevented my recovery, and it certainly didn’t stop me from loving those I have had relationships with in my life.
No, the barrier wasn’t that I didn’t love myself. It was that I believed no-one else could. That I was unloveable. Worthless. A fat, ugly, overemotional mess who sometimes had thoughts so dark I didn’t dare speak them out loud.
And so I spent my relationships second guessing what my partner wanted. Never revealing my awful, true self. Becoming more and more unhappy, increasingly lost, until they gave up and went off with someone else.
And because that was what I believed about myself, I struggled to accept love. I never noticed when someone was interested unless they actually told me. I’m ashamed to say I even dumped a couple of men who came across as too keen. They were clearly suspect if they were that into me – their judgement was flawed.
So this is what my experience has taught me:
You don’t have to love yourself to have a successful relationship, but you do need to feel worthy of love.
And you know what? I think that’s something I can achieve.
I don’t know if I will find love again, but if I am lucky enough to be given the chance, I will not hide who I am. That person will get to know the real me. The me who still struggles with dark thoughts and bad body image sometimes. The me who gets bad tempered when I’m tired and in pain. But also the one who has found the joy and self-acceptance I never thought was possible. And I hope they will feel able to show me who they really are in return.
Because maybe that’s the love I was missing out on all along. If only I’d felt worthy of it.
Whether you’re single, in a relationship, or still working on feeling worthy of love, Happy Valentine’s Day!
November 2020. A global pandemic. Dark evenings. Boredom. And I decided it was time. Time to tell my story, on my own terms. Time to take what I had learned challenging stigma as a mental health champion in the real world. Time to face my fears and go online.
I googled “how to start a blog” and got stuck in. I had no idea what I was doing. I didn’t know any bloggers, but at least I’d read a few blogs. I wasn’t even really active on social media. But hey, what had I got to lose? Most likely no-one would read what I wrote anyway. And I intended the site to be anonymous so it wouldn’t matter.
It was time to think of a name. I finally settled on The BED Post, because that’s exactly what it is. I post about BED. But the name also references the silence and secrecy that so often goes hand in hand with BED and ED behaviours. And finally, there’s an implied naughtiness that amuses me. Who doesn’t love a cheeky double entendre, right?
On 16th November 2020, after a week or two of playing around trying to figure out what I was doing, a lot of swearing, and a few sleepless nights, I finally hit “publish” and The BED Post blog was born.
And then absolutely nothing happened for over two months…
It wasn’t until the end of January 2021 that I posted again, and started the Instagram account in readiness for Time to Talk Day and Eating Disorders Awareness Week. Then things really started to pick up…
By April I had broken my anonymity and was starting to have fun experimenting with photos and reels on Instagram. Then in May the lovely BarefootRebel Zoe Burnett encouraged me to start using the Twitter account. I was discovering just how much I enjoy creating, finding my voice in a rather public way. And getting to know so many wonderful, supportive people in the online ED recovery community.
I’m not sure what, if anything, I expected when I started The BED Post blog, but I didn’t anticipate that it would support my own recovery so much. It has taught me the importance of pushing myself (but not too hard), facing my fears, feeling my feelings, being honest, learning new skills. It is helping me find out more about myself: both past, sicker me, and who I want to be in recovery.
And I certainly never expected such wonderful feedback. Messages and replies from amazing people who have reached out to share their experience, let me know something I posted helped, ask a question. Likes from people who I have never met but are becoming friends. I am so grateful for the many ways these people have enriched my life, and feel privileged that my work might have made the tiniest difference to someone else’s.
The BED Post blog and social media accounts might be small, but I’m still pretty proud of this past year. After all, I’m just a middle aged woman oversharing online in the hope I can help someone else feel less alone, less worthless, and more hopeful that recovery is possible.
So thank you to everyone who has followed, read, watched, liked or glanced at The BED Post blog’s content this year. I appreciate every single one of you. And I hope you’ll join me in discovering what the next year brings.
This week marks a year since I finally had THAT conversation with my mother. The one where I finally told her the secret I had kept for forty years…
I told my parents about my diagnosis of BED a few years ago, when I started treatment. We had a few conversations about what it involved, and they did their best to understand. The conversations mostly focused around practicalities – my need to eat regular meals and snacks, for example, so they understood why my eating habits had changed.
I remember my dad struggling, and confusing my treatment with a conventional weight loss diet. I remember my mum thinking that time I ate 2 mince pies late one evening was a binge, and trying to explain to her that a binge was way, way more than that. I’ll be honest, I’m not sure they will ever truly understand. It’s taken me decades to, and I was the one with the illness. But at least they finally knew I had BED, and was trying to get better.
What we never discussed was when it all started, and that I had kept my shameful secret from them since I was eight years old. Why not? Well, for one, they never asked. But mostly, I didn’t want to upset them. I didn’t want them to blame themselves. I had no idea whether they had even noticed. But that’s traditionally the way my family functioned. A lot went unsaid back when I was a child.
By this time last year, I was finally ready to open up. I had been campaigning against mental health stigma for a while. I wanted to be more open about BED, my most shameful and secret diagnosis. It was the one which carried the most stigma, the least spoken about, the most misunderstood, the one I could find very little about online, and therefore the one it was most important to speak out about.
And this was about to happen. BEAT had decided to make BED the focus of eating disorder awareness week 2021. I was contributing my lived experience towards the campaign and in the process of deciding whether to share my story publicly as part of it. But the idea of my parents finding out accidentally if I did? It was too much to bear.
So on this week a year ago, I finally told my mother that when I was around eight years old, I started stealing food from the pantry. Food I hoped wouldn’t be noticed. And that these behaviours and more continued for the rest of my childhood, all through my adulthood, until I finally had treatment and started working towards recovery in my forties.
It turns out, I had done an excellent job of hiding it. She had no idea. We had a frank and open conversation about it, and some events from my childhood. I was able to tell her that she wasn’t to blame. That I was just trying to cope in the only way I knew how. Because she did ask the question I’m sure most parents ask: is it my fault?
It wasn’t an easy conversation. It took an immense amount of strength to finally say these things out loud. And it took an emotional toll to process it. But the only thing I regret about that conversation is that it didn’t happen years earlier. Because that conversation was one of the most pivotal moments of my life to date.
From that point, I could be honest, open, and loud about my struggles with BED. I could try to help break down the secrecy, help others realise they’re not alone. Because I felt so, so alone for so long. I could help people realise that what they were doing isn’t wrong or shameful, it’s an illness which can be treated. I could show people that recovery is possible. I could spread hope. And soon after, the BED Post blog was born.
And if someone you know has told you they have BED and you can’t work out why you didn’t notice the signs? This is why: my mother never knew because I didn’t want her to. The same with my father, my sister, my friends, and the men I have had relationships with, including my ex-husband. I became very good at keeping people at arms length. At hiding binges, and the evidence of binges.
There’s still a misconception that eating disorders are just attention seeking. I’m telling this story to show that the opposite is true. You don’t keep something secret for decades if you’re looking for attention.
BED is an incredibly lonely illness. But it doesn’t need to be. With more awareness and understanding, with less shame and stigma, with more training, research and evidence-based treatment, people’s lives could be changed for the better. People wouldn’t wait 40 years to have THAT conversation. Or never have it at all.
There’s a secret I’ve been keeping since my twenties. A particular time when my ED voice was at its loudest. It’s this time I go back to whenever I question whether having an ED was really so bad, or whether I was ever really ill at all. In this blog, I am sharing it for the first time.
It was a bad time for me. My marriage had ended, I’d gone down the “revenge body” route. Started a very restrictive diet. Hired a personal trainer. My body rebelled, of course, and I started bingeing again. Then the purging kicked in, too, and became a regular thing.
I was getting so many compliments. Interest from men. My career was going from strength to strength. I was sticking two fingers up at my ex. Look how well I was doing without him! In public. Behind closed doors was a different story. Looking back, I was very far from well.
After a couple of years, I had a virus of some kind. I remember I developed jaundice. I thought: I’ll see the doctor tomorrow if I’m no better. But the next day I felt OK, so I thought nothing more of it.
Then I started getting really bad stomach ache late at night, particularly if I’d eaten anything rich or binged. The pain was so bad it would wake me up. I would lie awake in agony. The only thing that helped was making myself sick, then I was able to get a few more hours of sleep.
I looked up my symptoms online. They pointed to a stomach ulcer, caused by the virus I had had. It didn’t seem too bad. It was helping me manage my weight. The pain seemed like a reasonable price to pay for being at my thinnest. It was just the universe punishing me for being so greedy.
And there we have it: I believed this internal dialogue. I chose what I thought was a stomach ulcer and the risk of all the potential medical complications over weight gain. I put my fear of getting fat again ahead of seeing a doctor and making sure there was nothing sinister going on. And I truly didn’t realise that there was anything wrong with that decision. Of course the pain was worth it, everyone would make the same choice…
Some time later I was prescribed antibiotics for another issue. They cleared up my stomach pain, too. I was devastated.
Looking back, what I feel is relief and gratitude. I had a lucky escape. It marked the beginning of the end of my regular purging. I would continue to binge, and occasionally purge, for many more years, but I never knowingly risked my life in this way again.
And yet, a few months back, my father mentioned that time when I was so fit and healthy. He had no way of knowing what was really going on.
The world needs to stop worshipping thinness, prizing it above all else, equating it to health. Because it’s not always healthy. Sometimes it’s very unhealthy indeed.
It was so wonderful that BED finally made it on to national TV this week. I am in awe of Lorren and Martha, who were brave enough to share their stories for the film. I am glad you chose Sarah, an expert with personal experience to speak, too, even if you did spell her name wrong.
I know the producer had a lot of footage and information to squeeze into a short 5 minute segment. Unfortunately, as someone who spent decades with BED, I have issues with the information they chose to include and way the film was edited, and I wanted to take the time to explain why.
The overwhelming focus was on food – what is consumed during a binge, and stock film of “junk food”. Random mouths eating burgers, the image filling me with disgust and horror because I know that is how people see people with BED. The interview scenes focused heavily on binge foods, with only a secondary focus on shame and compulsion.
Here’s the thing. I have never told ANYONE exactly what and how much I consumed during my worst binges, not even my therapist. I’ve shared some of my trigger foods, I even wrote a blog about one of them. But I have never needed to go into more detail, because what and how much I binged on is completely irrelevant. BED isn’t about the food itself. It’s about why I binged, whether I was in control, the impact on my life, what I was feeling. Yet these were mostly missing from the film.
And the biggest feelings were shame and disgust. The exact way those pictures of chips and burgers and pizza made me feel. Because that is the image I know people have in their heads any time BED is mentioned. It’s the reason why I didn’t tell anyone except a few GPs for over 3 decades. Not even my family. It’s also the reason why I have finally broken my silence. Stigma thrives in secrecy.
BBC, would you use these images in a report for any other eating disorder? All of them include subjective binges to some extent, yet I know you would not.
And now we come to the film’s second message, and this one hit the mark. Go speak to your GP. Except that GPs don’t believe people with BED. They know very little about BED, because they only get a few hours of training on eating disorders. If you are lucky enough to find a GP who understands, the chances are that the local Eating Disorder Service is only offering treatment for anorexia and bulimia or people with a very low BMI. I won the postcode lottery. But only after more than 3 decades of diet advice from the GPs I asked for help. I truly hope that this will change as awareness increases.
So thank you BBC for highlighting BED this week. But please, next time you report on it, can you leave the diet culture lens at home? Can you leave out the food images? Can you focus on the fact that it’s a mental illness? Can you challenge shame and stigma? Can you consider the lack of support and offer practical advice?
People with BED have been shamed, underdiagnosed, and failed by the system for so long. The BBC has the power to help change that. Please help us to be heard with respect and understanding. This report was a great start, but I know you could do so much more as an organisation. I write this in the hope that you raise this issue again, with kindness and without stereotypes, so that others don’t spend decades in pain and secrecy like I did.
Thank you,
Sharon, The BED Post Blog
I am also emailing this direct to haveyoursay@bbc.co.uk.
If you missed the report, it is on Sarah’s Instagram account: @the_binge_eating_therapist
The BED Post 