When tallying up the components that will see an individual thrive or fall, the term community is often included. Alongside family, purpose and love, to be a functioning member of a community can give psychological benefits that research has gone on to suggest provides significant positive physiological benefits. A book I recently read on this subject detailed this link, which went as far as to identify whole towns and religious communities that appeared to die of similar diseases or actually be seemingly immune to them.
Learning about how the psychological crosses into the physiological has become a quiet passion of mine. The more I read on the subject, the more it frustrates me that we still regard them as separate entities, that mortality from a healthcare perspective is still predominantly measured by physiological status. The idea that community has such an effect on our life expectancy is fascinating to me. I grew up in a small village and a very tight-knit community. My parents were well known in it, my dad’s family go back generations there and he was a long serving fireman at the village station. The parties were amazing and our house looked like a florist when my mum had cancer. On the other hand when my parents were separating again everyone knew by the end of the day, I never got away with anything even while away from their supervision and I resented living our lives under the watchful eyes of and subject to the sometimes small-minded opinions of absolutely everyone. I left when I was still a teenager and I currently live in the middle of nowhere which I personally enjoy very much, but I’ll be moving back to the outskirts of that village in the coming months for the sake of my children who have longed to be in biking distance of their friends for a while now. All of my best childhood memories were spent doing what they are now asking to do, so it’s only fair I save being a people-dodging hermit for later on in life. Joking aside though, I do find a part of myself missing the unity, especially in times of crisis.
As an individual with an ED, I am lucky (and selfish) enough to have an ally. I have decent, well-meaning friends and a handful who have always had my back if I ever needed them. Among those, is one of my best friends who is as close to me and my ED as anyone I’ve ever found. We were friends before, bonding on many other aspects of our lives until we trusted each other enough to realise we actually shared our secret reality. She is also a mother, she’s in the same profession as me and she even fell down the same surgical intervention trap I did. The Samwise Gamgee to my Frodo Baggins (she’s got an allotment), we travel this part of our journey side by side and protect each other through as many steps as we can with zero censorship between us. It’s a bond like no other and she is the main reason I started this blog. I watched her go for the same help I had tried to, I watched her get the same response and felt anger for her on a level I’d never even felt for myself. She made me want to find this voice, because we knew there were people out there that didn’t have the support, love and understanding we are lucky enough to have in one another. She made me want to change it for us both. For many of us and irrespective of what road it is we are walking, we’d all like a hand to hold. I know I do. The universe did me one hell of a solid when it crossed our paths and simply put, I wanted to pay that forward.
I know in terms of luck with that friendship and the circumstances, I hit the holy grail of support. But what was there before, what is it supplemented by and in these unimaginably trying times for those with an ED, what is there right now?
Online communities, support networks and forums are available for pretty much every aspect of life now. ED’s are no different and most of us will eventually if they haven’t already, start to seek their own network of people who understand. This will be for a number of reasons but for me, it took a long time to start looking for these communities and even to accept this was where I could belong. I’d had bad experiences with support groups early on as at that time most of them were in person and not many of us were there with the intent of working through anything, more just to eyeball each other and wonder who the hell thought hard plastic chairs were a good idea.
Like any other town, we have a dodgy neighborhood in our ED community. We have the pillars. We have the veterans and we have the newcomers. We have those that spew negativity and those that sing positivity. We have a social crowd that want to speak to anyone and everyone and those that walk through the high street head down, catching conversations as they pass but not wanting to stop and speak, those that sit in the coffee shops and people watch and sometimes, those that prey. For most of us, this is one of many of the communities we are a part of in our lives on the whole, but due to the stigma and gaps in understanding of having an ED, this can be one of the only places we feel normal, understood and have the freedom to be uncensored.
The groups can be a minefield to work through and not all are as they seem. Some will fiercely describe themselves as not pro when clearly they are, some are there to glorify, share tips and are generally not safe places for those that are particularly vulnerable. The ones I’m in now are as policed as possible and I tend to dip in and out depending on my frame of mind. There have been darker points where I’ve dipped into darker resources. There have been desperate points where I’ve just wanted to talk to people that could give me hope or scare me into the actual help I needed at that time, but now I’m in groups that mostly advocate recovery, even if I have a hard time believing anyone that claims to have reached that milestone. It’s not that I’m cynical at heart, but as much ‘once an alcoholic – always an alcoholic’ is a widely accepted concept, I just don’t believe that an ED is something anyone can be completely cured of in the ways in which some describe. We all have to eat. It’s not as though someone can remove that need or the target of our compulsion. Maybe my cynicism is based on the fact I just haven’t gotten there yet but nonetheless, I do enjoy reading a good recovery story, no matter how much I can believe it or not.
The very first book I read about experiencing an ED was ‘An Apple A Day’ by Emma Woolf, which I have probably read cover to cover about 7 times over the years since. Ironically I found myself reading it after arguing that I didn’t believe for one moment she was ‘recovered’, purely based on what my idea of recovery was at the time. I read it and was both overwhelmingly humbled and relieved. It was uncensored, raw and completely relatable. All these ‘bad things’ I felt and I did in secret, someone else was the same and it actually looked as though she was going to be ok, which meant there was a good chance I was going to be too.
When I decided it was time to try and attempt my own recovery a few months ago, I decided to mute all online groups. I didn’t want any rogue triggers and I didn’t actually want to feel like I did belong there anymore. I was moving out, a new identity and a proper fresh start. Obviously, that’s not quite gone to plan. In the depths of my anger and frustration when I slipped, resigned to the fact I had just let myself down and this truly was the unachievable, I unmuted my community and unpacked my things for what felt like the millionth time.
What I returned to was not even remotely expected. There weren’t any rogue triggers or posts that echoed condescendence. Instead there was a mile-high tidal wave of panic, desperation and fear, which unmistakingly mirrored my own. There were ‘new’ members that had been recovered for a long while, some a decade or more re-joining to explain that these events we are now globally trying to survive through had seen them catapulted back into ED behaviors they felt they’d long since beaten. The pleas from people who now find their eating habits under a microscope in close quarters with their families. Recoveries derailed, behaviors dangerously exacerbated, regular appointments now cancelled and support overwhelmed. An otherwise unseen and unconsidered world overturned. I read through, heartbroken and scared. My anger quickly shifted to compassion and shamefully, even a sense of relief, much like when I picked up that book for the first time. I really wasn’t alone. I wasn’t alone that my ED was screaming and my recovery was failing. I wasn’t alone in my hopelessness. I wasn’t alone that I found myself clinging to my only sense of normality left, even if like them, I didn’t want to. I wasn’t alone that this matters too. I can’t describe how guilty I feel to take comfort in this community right now, the paradox of reading through the like-minded suffering of humans and gaining any sense of personal relief. It’s created a different kind of inner conflict for me. The thought of people in so much pain is unbearable.
As with any crisis in this world, it brings about the opportunities for moments of humanity that otherwise we may never have witnessed. In this, the outpouring of love, reassurance and understanding is palpable. Much like the neighbours in open streets clapping together on a Thursday evening, the protecting of the vulnerable and the gin and company over the garden fence in the sunshine; this community, just like the one I see around me and nationwide are coming good in the face of the unknown. I even found myself insisting to those who are drowning in the same sense of failure, that this does not mean hope is lost. This does not take away from all they have achieved and how far they have come. This really is the unprecedented and this couldn’t have been foreseen, no matter how much I despised myself for not being able to instantly circumnavigate it. If I wanted them to forgive themselves, if I could appreciate the absurdity of their self-deprecation, I had to forgive myself and appreciate the absurdity of my own. I eventually realised I was unknowingly addressing and sending out compassion to pieces of me and my anger dissolved when I looked in the mirror of my community and I realised it had no place there. It needed something stronger. It needed love.
Now more than ever, love is paramount. We look to love in times of pain in its many different forms, in that hand to hold, in words of compassion, in words of encouragement and even in those bags of shopping left on your doorstep. We need it in order to fight our darkest days and to set fire to the bad. The beauty of love itself is its ability to be felt behind screens, over oceans and even at a now sometimes torturous 2 meter distance. We are all in the middle of physical disconnection and proximity maybe power, but love transcends proximity. It transcends everything. Our world now currently ground to a halt is allowing us feel it in ways we never would have, deep within our inherited and chosen communities and sometimes, community can provide all the love we need. To reach out and know you are heard, understood and someone, somewhere is always there. Unmute it, listen and give. No one has to walk alone.
And for you my Samwise, our story is far from done. Thank you for being my hand to hold. X