On January 13th 2011 I accepted a friend request on Facebook from Charlotte Bevan.
I had started speaking to Charlotte off and on during 2010, but had been aware of her presence online for longer. A vocal and enthusiastic member of FEAST and the Around the Dinner Table forum for parents and carers of children with eating disorders, Charlotte became involved in the online world of eating disorders while helping her daughter recover from anorexia nervosa. I lurked on ATDT often during 2009/10, trying to use their knowledge and experience to fuel my own recovery. By the time I started noticing how awesome Charlotte was her daughter was doing a lot better, and she had redirected a lot of her energy and caring onto other parents and carers who were struggling. Her posts were always supportive, informative and direct. She never hesitated to tell people what they needed to hear, although that was sometimes difficult to hear, sometimes ENTIRELY WRITTEN IN CAPITAL LETTERS EVEN THOUGH SHE WAS TRYING TO HELP PEOPLE CALM DOWN (receiving a message from Charlotte just saying BREATHE started inducing a Pavlovian-style relaxation response in me after a while), and always bravely and confidently stated. She didn’t seem to mind making waves as long as what she was saying was helpful and accurate.
I admired her and some of the other ATDT members from afar for a while, and once I was much better I started trying to get their attention, because they had helped me without knowing it, and I wanted to give something back. The perfect opportunity came when I noticed that something Charlotte had written on a Guardian article on eating disorders had been highlighted as Comment of the Day on their website. I plucked up the courage to introduce myself via Facebook message (along the lines of “hi, you don’t know me but I promise I’m not a creepy internet stalker even though I know a scary amount of stuff about you from ATDT) and to point out the accolade to her. After a few more months of feeling rather like I was auditioning by backing her up in other comment wars on eating disorder articles, Charlotte put me forward to the other members of the UK branch of FEAST, to be included in their email backchatter and general plotting for world domination.
It sometimes seemed that if she’d gone into politics, Charlotte might actually have stood a chance of achieving world domination. She was always doing a hundred different things at once. She supported parents and carers and the occasional person in recovery, more of us from the latter category seeming to be drawn to her the longer she was involved in the eating disorder community. She communicated and debated with world leading clinicians and researchers, always from a position of curiosity and a fierce desire to learn and to advocate for the perspective of parents, never appearing to be intimidated by anyone’s status, although I know she sometimes felt otherwise. She fought battles with primary care trusts and treatment providers who were not acting in the best interests of the families she was trying to help, spending hours pouring over medical records and the vagaries of the legal system. No problem was too big to scare her off or too small for her to dismiss as of no consequence. She had this incredible ability to make the person in front of her – or at the other end of the email in front of her, anyway – feel like the most and only important person in the world.
Charlotte was going to come to my wedding. She was one of only two people allowed to wear a hat to the occasion, the other being my friend Barbara. She was elevated to this status despite my bias against hats at weddings because while trying to rescue possibly hundreds of other people, she always had time for me. Back in 2011 when I had been in Newcastle for less than a year, was struggling to look after myself and my last relationship was falling apart, she sent me a one line email along the lines of “are you ok, I’m worried”, which after some conversation turned into an offer to hang out with me on Skype for meals and snacks until I got my shit together again. I managed to get myself back on track before that became necessary, but knowing that the offer, and Charlotte, were there, was invaluable. I am not good at asking for help – I am really terrible at asking for help, actually, because my pride gets in the way. Somehow Charlotte felt like a safe and comfortable person to talk to despite my natural defensiveness.
Later that year she came to my rescue again. She encouraged me to go to the FEAST conference in Alexandria, and initially even offered to share a hotel room with me to help with the cost. When it became apparent that everyone, including Charlotte’s own mother who obviously took precedence, wanted her in their room, she put me in touch with several other women looking for a room mate. That was the first time I nearly met Charlotte. Her breast cancer was diagnosed a few months before the conference, and when she should have been in Alexandria with us she was in the middle of her treatment instead. Once over the Atlantic I got myself into a bit of a jetlag-induced state because the hotel restaurant didn’t quite seem to grasp the whole dairy free thing, and I was so paranoid about making a fuss about the food in case someone thought it was an anorexic thing rather than an allergy thing. In a moment I am still not massively proud of, for some reason even though she was 3000 miles away, it was Charlotte I sent a panicked message to on Facebook. Charlotte somehow managed to calm me down, get another lady whose daughter had a dairy allergy to sort the hotel out, and reassure me that it was in fact perfectly fine to freak out on a woman who was receiving treatment for cancer on the other side of the world rather than speaking to one of the dozens of people I vaguely knew who were in the hotel with me, because she was Charlotte and that’s the sort of person she was.
I nearly met Charlotte again at the conference in Nottingham in November 2012. Charlotte somehow managed to wrangle a scholarship for me because she knew how completely broke I was after a year of unemployment. She made it possible for me to attend, but didn’t make it to the conference herself because by that point she was caring for her mother who was dying of, again, cancer. I really fucking hate cancer. She was with us on Skype as much as possible but there was an obvious Charlotte-shaped hole in the whole event.
While cancer seemed determined to foil some of Charlotte’s plans to be physically present at events, until she was very ill it barely put a dent in her online activities. In my folder for FEAST correspondence I currently have 2149 emails saved, and I’ve only ever been on the outskirts of the operation. Charlotte took part in all of the conversations those emails make up. Email and Facebook discussions include the state of treatment for eating disorders in Britain, the philosophical implications of monism vs dualism, concerns about specific people and how we could best support them, lots of humour, a fair amount of innuendo and an impressively weird chain of comments on size acceptance for carrots. I loved seeing her name appear in my inbox, because it was always attached to something I wanted to read and engage with. Charlotte’s emails often provoked long replies which very effectively distracted me from crappy moods, unwanted household chores, assignment deadlines and all sorts of other things which I have absolutely no regrets about neglecting in favour of our discussions.
In 2013 Charlotte’s cancer came back, and she had to announce that it was terminal. While all sorts of horrors had to be faced in her non-internet life, she found time last year to write a book, battle at least two primary care trusts who had been providing inadequate care for people she knew, and become the foundation for the UK arm of the international ANGI project, which is collecting DNA samples from people with a history of anorexia. The challenge is to get 25,000 samples from all over the world, and Charlotte’s Helix aims to contribute between 1000-4000 samples from the UK. Without Charlotte, the UK would not be participating. I’ve signed up to send them a blood sample, and I would ask anyone else out there with a history of anorexia consider doing the same.
I backed off a little in the last six months. She seemed overwhelmed by the sheer amount of love and support directed at her by all of those hundreds of people whose lives she had changed – it was amazing to watch – and I didn’t want to upset her. I felt guilty for grieving while she was still alive, and I didn’t want to burden her with my sadness, it wasn’t my place. She was involved in so many big and important things that she wanted to get going before she couldn’t work on them any more, and I didn’t want to get in the way. I missed her hugely a long time before she was gone. I half regret this, because I wanted so badly to make a fuss of her and tell her how much I adored her, and to speak to her whenever possible before it was too late, but I am also half glad I fought against that urge, because she hated to be fussed over. Charlotte tried to mother pretty much everyone I know – she called herself my internet mum – but there were far fewer people she would allow to take care of her.
On January 13th 2014 Charlotte died and I’ve been trying to write this for four days and it’s still not right. She would, as my friend Fiona said, be furious at being spoken about like some kind of saint. But it’s hard not to get a little hyperbolic. I feel guilty for being so devastated because Charlotte was never mine to lose, but I thought the world of her, she was one of my very favourite people and I am quite heartbroken. If this is the impact she made on those who knew her online, I can’t imagine how her closer friends and family must feel.
Charlotte Bevan, activist and advocate extraordinaire, author, carer to all those slightly lost souls you cried with and comforted and supported, mother to your own beautiful children, international research star and dog person, I raise my cup of tea to you and feel glad that wherever you are, you are out of pain now.