mental health stigma – The BED Post

Time to Talk Day 2023

#TimeToTalkDay is a day of conversations about mental health. It’s a day to check in with others, share experiences, and most of all, to challenge stigma around mental illness. Even though the Time to Change campaign is no more, the day is still marked by Mind, Rethink Mental Illness, Co-op, and of course, those Champions from the original campaign, albeit under different banners.

I joined the campaign in 2017. I was a very different person back then, and in a very different place mentally. Still unwell, on antidepressants and in therapy, very unsure of myself, and fairly new to being open about my mental health issues, I wasn’t strong enough to campaign fully yet, so I started small. I wrote an email to my friends and colleagues at work, some of whom knew about my issues, some who didn’t. Here’s what I wrote:

Hi all,

Today is Time to Talk Day. Many of you already know this is a cause that means a lot to me. It’s a few years now since I made the decision to be open about my mental health issues, and I have never regretted it, not once. When I was first diagnosed with depression, age 21 and on the verge of failing my final year at university, I didn’t even tell my parents. Finally, thanks to campaigns like Time to Talk and Mind’s 1 in 4, the stigma is disappearing, and the isolation I used to feel is firmly in the past.

We all have some knowledge of mental health issues, it’s part of our daily job, so I won’t bore you with the details of the exhaustion, shame, and frustration my conditions cause me. Instead I want to use today to say thank you.

Thank you for not judging. Thank you for noticing when I’m having a bad day and checking I’m OK. Thank you for sharing stories of people with similar issues so I know I’m not alone. Thank you for seeing me as me, not as a mental illness. Thank you for making me laugh. Thank you for helping me feel “normal” (whatever that is). It makes a massive difference and it’s what today is all about.

Kind regards,

Sharon

I agonised over that email, and was terrified to press send. But of course, my colleagues’ and friends’ response was as kind as ever. It gave me the courage to keep speaking out, having those conversations, and challenging stigma. To join my local hub, where I found more friends with inspiring stories. And then eventually, to start this blog and social media accounts dedicated to those very same things.

You see, Time to Talk Day, and conversations about mental health, can make a massive difference. They can give strength, courage, and support. They can change people’s minds and beliefs. They can create a ripple that spreads out and touches more hearts and minds than you ever thought possible.

This Time to Talk Day, I hope you find the courage to be open, speak out, or just ask a loved one how they are. And if you’re not sure what to say or do, you won’t go wrong by starting with those things I was grateful for back in 2017, because those were things that helped give me the strength to recover, and keep fighting to stay in recovery: friendship, understanding, and love.

If you’d like know more, click here: https://timetotalkday.co.uk/

Silence

I thought I’d learnt to trust you
That love would set me free
But how could that be possible
When I was hiding an ED?

Concealing frequent binges
Fat, disgusting, greedy me
How could anybody love this?
A woman hiding an ED

My dirty little secret
I couldn’t let anyone see
The fat pig living inside me
So I kept hiding my ED

I said I’d leant to trust you
I was lying to you and me
Because I couldn’t really trust you
If I was hiding an ED

Was it you I never trusted?
Or was the lack of trust in me
Too scared of being vulnerable
To stop hiding my ED

Our relationship never stood a chance
How could you truly ever know me
When I hid all that self loathing
With my binge stashes and ED

No, you never really knew me
And there’s no-one to blame but me
I couldn’t bring myself to trust you
Enough to tell you about my ED

So now I’m speaking loud and proud
About you, my ED and me
In the hope that someone listening
Trusts someone enough to disclose their ED

If you’re worried about your relationship with food, don’t suffer in silence. Please tell someone close and your GP.

Breaking my silence

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.

Binge Eating Disorder on the BBC: an open letter

Dear BBC,

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

Stigma and Time to Change

This blog was written for a local council to mark Time to Talk Day 2021.

A 2015 parliament paper* describes Mental Health stigma using Time to Change’s definition: “the set of negative attitudes, pre-judgements, prejudices and behaviour that can make it harder for inviduals with mental health problems to live a normal life”.

Time To Change has been challenging Mental Health stigma since 2007 on a national level, and more recently on a local level through its community hubs. I am a “champion”, or volunteer, with the Northamptonshire Time to Change Hub. Champions have lived experience of mental illness. My experience goes back to childhood, although my first diagnosis, depression, was at 21. It wasn’t something I shared. No-one did back then.

At the time that parliament paper was published in 2015, I was receiving treatment for depression, anxiety and Binge Eating Disorder. I was also rebuilding my life after literally losing everything. The reasons for this were complex, but mental health stigma and discrimination played a part, even though I did my best to assert my rights.

I had started a new job, and was open about my mental ill-health for the first time. To a point. Because anxiety attacks are difficult to hide. I was wary and careful to notice how my new colleagues responded. Most people accepted me without judgement, and it was such a relief! My new employer also allowed me the space and time to go through therapy and group work with the Eating Disorders Service, and phase off my anti-depressants when I was ready.

It hasn’t all been perfect, thoughtless comments are still commonplace. Particularly around Binge Eating Disorder, which most seem to think is about greed and lack of willpower. I have received so much diet advice over the years, even from healthcare professionals who should know better. But I’ll save that for Eating Disorders Week in March…

I first heard about Time to Change and Time to Talk Day in 2017. The message struck a chord, and I decided to write an email to my team, thanking them for their support and acceptance. I remember being so scared as I pressed “send”, then shedding more than a few tears at the kind responses I received. At this point I realised the power of sharing my story, not just for others, but for myself. My aim had been to help prevent other people from going through what I had, and yet the more open I was, the more my own self-confidence grew.

It is now 4 years since I sent that email. This Time to Talk Day I’m in recovery and talking to strangers online. It has become second nature for me to challenge mental health stigma whenever and wherever I see it. I am learning that I am enough, that I don’t have to hide who I really am. I am finding my voice. I have started to write. I have a sense of belonging I never had before. Yes, I have helped others by being a part of the Northamptonshire Time to Change Hub, but it has given me so much in return.

*https://www.parliament.uk/business/publications/research/key-issues-parliament-2015/social-change/mental-health-stigma/#:~:text=What%20is%20mental%20health%20stigma,to%20live%20a%20normal%20life.