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/

The BED Post blog is a year old

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.

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.

Blame

“It’s your fault!”
Words spat at me,
Twisted mouth,
Finger pointing:
“It’s all your fault!”

What’s my fault?
Daring to exist?
Being born?
Being conceived?
What is my fault?

What’s my fault?
That you go out?
Drink too much?
Throw things at us?
Is that my fault?

What’s my fault?
Being a kid
In a life
I didn’t choose?
That’s not my fault.

It’s yours.

Who Am I Without My Eating Disorder?

I was around 8 years old when I developed binge eating disorder symptoms. Those behaviours continued for 40 years, sometimes with purging, and with varying levels of restriction. Sometimes I went for a while without bingeing. But basically, BED (and all the other stuff that goes along with it) has been a constant throughout my life.

I grew up with it. I went through puberty with it. I took it with me to all the places I’ve lived. It was there through my successes and failures. It was the hidden third wheel in my relationships. It was there longer than almost everything else in my life. It’s still there some days, like an old friend I’ve outgrown but still see out of nostalgia for what we once had.

BED is such a massive part of who I was that I’m still a little lost. Who am I without it?

I found myself going back to childhood me. Me before BED. Who was she? A bookworm, fascinated by language. An introvert who loved acting in school plays because she got to pretend to be someone else. A perfectionist who got good grades.

The perfectionism had to go as part of my recovery. After 40 years of living a lie and pretending to be someone I’m not, I’m tired of acting. It was exhausting.

So that leaves language, or languages. That love stayed with me. I studied them at university, I made them my career. They were the other constant until a few years ago. Or to be more precise, other people’s language, other people’s words. I didn’t feel that I had anything to say. Or if I did, I was too ashamed to say it.

Then one day in recovery I wrote something. Then a year or two later, I wrote something else. And gradually I realised that maybe I finally have something to say. That I don’t have to be ashamed any more. And if I write and speak about my experience, and just one person gets help as a result, it will all have been worth it.

So who am I without my eating disorder? A writer (well someone who writes stuff) and a campaigner against mental health stigma. I still have no idea what else I am, but it’s a start.

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.

Time to Talk Day 2021: The Power of Small

This year, the theme of time to talk day is the power of small. People underestimate the small things, but they mean so much, and they can lead to something very big indeed.

For me, it really did all start with those small conversations. Now and then, when a friend or colleague asked how I was, I would tell the truth. Just something small like “I’m having a bad day today.” I didn’t need to say any more than that, I often didn’t want to say more, it would have been too overwhelming. But I’d acknowledged the elephant in the room, or the black dog if you will. I’d said nothing, but somehow everything. I was openly acknowledging that I was mentally unwell, that I wasn’t OK, and that that, in itself, was OK.

Then I heard about Time to Change, and the next Time to Talk Day I wrote an email thanking those friends and colleagues for being there, for understanding that I was more than my mental illness. It might have seemed small, but it was massive. I was so scared. And very anxious. But I will never regret pressing “send”.

And this Time to Talk Day? The power of small is well and truly showing itself. Time to Change Northamptonshire has been running for 18 months now. Plucking up the courage to attend my first meeting was another small thing I’ll never regret. Being around people who get it. The support, the encouragement, the jokes and banter! One small step at a time, that email has turned into events like tonight’s. I’ll be sitting there speaking to a bunch of strangers about personal stuff! It’s turned into poems. I’ve even started a blog! It’s like I’m some sort of stigma fighting superhero!

Well maybe not quite. But there’s one thing that can’t be denied: that small decision to become a Time to Change Champion has changed me forever. That sad, anxious women I used to be is long gone. Well mostly. As long as she doesn’t have to see the dentist during a global pandemic! Yes, there were tears! And the closest thing to a panic attack I’ve had in years. But I made it through.

And when there’s no dentist in sight, there’s a new confidence. The sort of confidence that the old, ill me could never have dreamed of. A confidence borne from being among people who support me, believe in me, and encourage me to find that inner voice I never knew was there. That is what being a champion means to me, and that is the power of small.

Fat Girl Thin Then Fat Again

There’s no point denying it. I am fat, obese, curvy, plus size, or however else you want to phrase it. I have used disordered eating as a way to control my emotions and deal with stuff for nearly 40 years. For nearly 30 of those I was told by medical professionals to go on a diet. And I did try. But I had undiagnosed binge eating disorder. Although let’s be fair, binge eating disorder wasn’t even a diagnosis when I developed it. For another 5 of those years I was praised for losing weight. Most of those years I purged.

Now’s the time for all those comments from internet trolls about how I would be so much healthier if I lost a few stone, right?

About 5 years ago, a GP referred me to the Eating Disorders Team after I lost those few stone while on SSRIs. I was inundated with compliments about how well I looked at the time. Yes, I was so well I needed anti-depressants to function, but the weight loss seemed so much more important to everyone, including me.

I have been open about my depression and anxiety for years. I have been so lucky, I haven’t faced any major stigma. The people I speak to take these in their stride. They can relate to them on some level. Some have even responded by sharing their own experiences. But my eating disorder? That’s a different thing entirely…

Shocked, disbelieving faces, trying not to look me up and down, trying to work out how I could possibly have anorexia at my size.
Newsflash: Anorexia is not the only eating disorder. And let’s not even mention how ridiculous it is to have a weight criterion for anorexia diagnosis, implying it’s possible to be not anorexic enough and delaying treatment.

“Oh yeah, me too. I go home and eat chocolate after a tough day lol”
Silly me, I didn’t realise it was that simple. I could have saved myself years of therapy.
Of course I don’t say these things. I don’t want people to feel bad. Most don’t know that eating disorders aren’t just about food. Just look at the messages we are bombarded with! They are all very black and white. Weight loss is revered. Fat people are demonised. Yay! A celebrity lost weight. Boo! Obese people are lazy and a drain on society. Thin good, fat bad. But eating disorders are much greyer and more complex than that.

And yet one simple realisation has started to change everything for me: my weight actually has no relationship to my value as a human being.

What is really more important? Being thin or being kind? Smoothing cellulite or battling stigma? Having perfect skin or having compassion? For a long time I wasn’t sure. Now I am.

I have spent most of my life being ashamed about my relationship with food. I have spent even longer being ashamed of my size. I am determined not to feel that way any more. And most of the time I succeed. But it is really hard because of the world we live in right now. The Government is telling me to count calories and lose weight. I am surrounded by people trying to lose those extra pounds they gained during COVID.

So how can you help me and others struggling with eating disorders? Remember they’re not just about food, and sometimes not really about food at all. Ask us how we’re doing. Then ask a second time. Never praise weight loss. And finally, think about your own relationship with food and your weight. What unintended messages are you sending your friends, your family, your children? Good Mental Health is way more important than any number on the scales. Take it from someone who learned the hard way.

If you want to know more about this issue, contact BEAT. Details at www.beateatingdisorders.org.uk