My illness made me an activist, but now I’m exhausted

Emily Bashforth’s illness made her an advocate for fellow sufferers but she’s battling burnout. She feels constant pressure to campaign for better support and services, at the same time as managing her own recovery from anorexia. Here she argues why we all need to be mental health activists, not just those with lived experience.

Words by Emily Bashforthphotography by Stephanie Wynneaverage reading time 6 minutes 1 December 2021

Article

Portrait of Emily Bashforth. She is standing on a busy street which is blurred in the background. She is wearing a cream jumper, a checked coat, orange plaid skirt and red lipstick. She has long wavy brown hair and is looking directly at the camera.

Superimposed on the image are lines of text - mostly unreadable. A visible phrase reads 'Tired of reliving my trauma'.

I started sharing my recovery from anorexia online in spring 2019, and I fell into mental health advocacy as a result.

Joining the recovery community online, and regularly taking part in conversations about eating-disorder treatment, really ignited a fire of passion in me. I badly wanted to be part of a movement for change, helping to shape a world where everyone and anyone can access support for an eating disorder.

Sharing my story gives my arguments more gravity because they can be backed up with personal experiences. Reading other people’s stories highlights how inaccessible treatment is and what progress needs to be made.

As time has passed, however, the pressure to be an advocate for eating-disorder recovery has mounted. I now feel immense responsibility to keep up to date with the latest legislation regarding eating-disorder services, comment on every speech made by an MP, respond to every problematic tweet from celebrities enforcing diet culture, and to constantly voice my opinions and experiences.

It’s got to the point where it feels that if those with mental illnesses don’t do the campaigning, we’ll never see change.

A photograph of Emily Basforth standing in front of a grey wall. She is wearing a cream jumper, an orange plaid skirt and red lipstick. She has long brown wavy hair. To the left, there is a wooden door. To the right, there is a text message conversation superimposed on the wall.

The text messages read:
'How do I know if I have an eating disorder?'
'Your first port of call should be your doctor as I can't diagnose you'
'How long does recovery take?'
'Recovery is different for every person but sadly it isn't and overnight process.'
'Can you give me advice?'
'I can offer some reassurance, but I can't give professional advice as I'm not a trained medical profession. I am merely someone in recovery.'
'I'm struggling with recovery'
'Recovery can be so brutal, and it's normal to struggle. Please keep fighting, because it will all be worth it.'
' I feel lost'
'Be sure to lean on those around you for support, because there are people who care. Talking to someone always helps.' — “Sharing my story gives my arguments more gravity because they can be backed up with personal experiences.”

It’s got to the point where it feels that if those with mental illnesses don’t do the campaigning, we’ll never see change. It feels that unless we advocate for better funding for our treatment, challenge stereotypes, and voice our concerns regarding harmful legislation, the world will remain unsafe for us.

We also want to do everything in our power to offer comfort and reassurance for fellow sufferers. We do this because existing as someone with a mental illness is tough, especially when politicians enforce reckless policies, media outlets give platforms to ignorant views, and support services are on their knees due to a lack of funds.

When campaigning seems futile

Right now, people with lived experience of mental illness, including eating disorders, are being left to do all the work, while simultaneously balancing our own recoveries. It’s exhausting. Is this happening because we’re the best, most knowledgeable ones for the job? Or is it because we’re so personally invested in the cause and desperate for change that we’ll often work for free?

Cara Lisette, a mental health nurse from Hampshire, agrees that it’s mostly the latter.

“I also think, a lot of the time, people who don’t have lived experience with mental illness are worried about saying the wrong thing, so they prefer not to say anything. Plus, if mental illness isn’t something that has ever affected you or people close to you, you’re probably going to be less invested in it as a cause.”

A photograph of Emily Bashforth standing on a colourful staircase in front of a white painted wall. She is looking down at her phone.

She is wearing a cream jumper, orange plaid skirt, black boots and red lipstick. She has long wavy brown hair.

To the right of the photo, there is a close up image of Emily looking at her phone which is superimposed onto the main image. — “As time has passed, however, I now feel immense responsibility to keep up to date with the latest legislation, respond to every problematic tweet from celebrities, and to constantly voice my opinions and experiences.”

Cara engages in social-media activism and public speaking, sharing her own story of eating disorders and depression. She not only feels pressure to be vocal, but to be successful in her activism.

“I feel proud of myself for using my experiences to try to bring about positive change, but I get frustrated with how slowly change happens and how difficult it is to bring about. It sometimes feels like I’m banging my head against a brick wall.”

It’s a feeling I know all too well, like you’re screaming into a void. No matter how much we rant on about the urgency of mental health funding, budgets are slashed and the number of people needing support skyrockets.

Amber Swinglehurst, a medical student from Leicestershire, agrees. She also argues that widespread misinformation surrounding mental illnesses like eating disorders contributes to non-sufferers’ reluctance to speak out and campaign.

Photograph of Emily Bashforth sitting on stairs which are painted in a variety of bright colours. The stairs have a red handrail.

Emily is looking up, towards the top left of the photograph. She is wearing a cream jumper, orange plaid skirt, black boots and red lipstick. She has long brown wavy hair.

To the left, there is some small text superimposed upon a grey wall. Beneath the text is a wooden doorway and wooden floorboards. To the left of the door is a wall with a floral patterned wallpaper. — “Right now, people with lived experience of mental illness are being left to do all the work, while simultaneously balancing our own recoveries. It’s exhausting.”

“I think we need to tackle the idea that you must have suffered to be able to stand up,” she told me.

“I don’t think there’s enough education surrounding mental health. Often education is limited to common mental illnesses, like anxiety and depression. I think if people knew more about conditions like eating disorders, and their prevalence within society, they’d be willing to fight for change.”

Amber also feels the pressure to remain on top form with her activism as a prospective doctor.

“As someone studying to be a doctor, I feel the best way to tackle issues facing mental health sufferers is to be open and honest myself,” she said, following battles with depression and atypical anorexia.

“I don’t want to be a hypocrite.”

A portrait of Emily Bashforth sitting on a patterned sofa. She is wearing a cream jumper, orange plaid skirt, red lipstick and is holding a pink iPhone. She has long brown wavy hair and is looking directly at the camera.

Behind the sofa are two windows, showing buildings outside. Between the windows, there is a panel on the wall where there is an image of Emily superimposed. She is standing up and looking at her phone. — “I am tired of reliving my trauma and explaining to authorities the urgency for proper care for people with eating disorders. The onus shouldn’t be on us.”

Tired of reliving my trauma

Telling the world your life story is draining. It’s something I feel the full force of regularly as I use social-media posts and articles as platforms to document my recovery and connect with fellow survivors. Add to this the relentless pressure to campaign and protest for education and better-quality services, and alerting those around me to the fact eating disorder referrals are surging, and it really takes a toll.

I battle burnout often, both from doing too much and always feeling like I’m not doing enough. Self-care as a mental health advocate is of utmost importance, and I’m not just referring to bubble baths and Netflix. I mean genuine professional support and establishing barriers in both your personal and professional life; knowing when to close the laptop and step back.

I am tired of reliving my trauma and explaining to authorities the urgency for proper care for people with eating disorders. The onus shouldn’t be on us as individuals to campaign for our own medical care. I shouldn’t have to write to my MP to prevent doctors refusing to help people with eating disorders because their BMI isn’t low enough, or to politely ask for money for beds for those with the mental illness with the highest mortality rate.

Every day I read about someone losing their life to an eating disorder, or severely struggling following lack of care.

Photograph of Emily Bashforth. To the left of the photograph, Emily is standing against a floral patterned wall looking directly at the camera. She is holding a pink iPhone. She is wearing a cream jumper and red lipstick, and has long brown wavy hair.

To the right of the photograph, there is an iPhone screen. The screen is showing the camera app and displays a blurred image of Emily standing in front of this. — “My illness made me an advocate. It is a rewarding and inspiring role to take. But it’s one I want to *want* to do, not something I feel like I *have* to do.”

And not only am I tired, I’m angry. Angry that my friends are being left to die from preventable illnesses. Every day I read about someone losing their life to an eating disorder, or severely struggling following lack of care. This shouldn’t be the case.

It’s not only those with personal history of eating disorders who can understand the crisis we’re facing. Mental health activism isn’t an exclusive club. You don’t need a membership card to get involved, and responsibility to create change shouldn’t lie on the shoulders of those struggling, just as the job of ensuring road safety isn’t down to people who’ve been injured in car accidents.

My illness made me an advocate, and I’m grateful for the connections I’ve made and the voice I’ve acquired as a result. It is a rewarding, fulfilling and inspiring role to take. But it’s one I want to want to do, not something I feel like I have to do, especially when pouring all my efforts into campaigning shifts my focus away from my own healing.

Our illnesses made us advocates, but we’re running low on fuel. It’s time for those outside the community to come and give us a push.

About the contributors

Emily Bashforth

Author

Emily Bashforth is a writer and journalist specialising in mental health and wellbeing, frequently sharing her own experiences with eating disorders to raise awareness and campaign for change. She can be found online, documenting her journey and offering education.

Stephanie Wynne

Photographer

Stephanie Wynne has worked as a freelance photographer for over 25 years. She takes a cooperative approach to her picture making and since 1997 has been one of the two photographers in McCoy Wynne. She further collaborates with individuals and community groups using photography as a socially engaged practice. She has recently exhibited at: the Open Eye Gallery, Tate Liverpool and Williamson Art Gallery. Stephanie is also a founding member of the SixBySix photography collective.