Twelve months with keys to the door, part one

In July I met a milestone in my recovery that for a while seemed impossible. Since 2019, I have been in a cycle of being discharged, then readmitted to hospital following relapses with my eating disorder. However, July marked me being out of eating disorder units for one whole year since 2019! This year has been full of highs and lows, far from plain sailing with many moments I’ve had to fight to convince my team I could continue in the community. Being out of hospital is not a marker of full recovery by any means, and discharge does not mean (sadly) that the recovery fairy has cured someone. Being at home has, at times, been more challenging than being in hospital. In hospital, the anger and guilt I felt from challenging my ed could be displaced elsewhere. I was not ‘making’ myself do it, but instead could see progress as forced. At home, no one can make you do it. You can have someone checking in on you, fighting against the eating disorder or trying to manage your eating, but ultimately it is down to you. Personally, I find this really hard. You are actively trying to overcome something that feels safe and at times feels beneficial to you, so why go against it? The mental backlash and guilt of deciding to recover felt worse out of hospital, as no one is forcing treatment upon you. Though I’d love to say this year has been amazing and time spent out of hospital has marked my success, it has actually brought me greater challenge in unexpected ways. However, I have achieved more than I have ever done in terms of recovery through this different experience of challenging my eating disorder at home. To celebrate my twelve ‘up and down’ months of being inpatient free, I thought I would reflect on twelve things I have learnt in this time. I've realised, given that life is actually very different out of hospital, i’ll have to do it in series. These lessons range from the slightly lighter, more comedic reflections on a ‘normal’ life away from the inpatient setting that you often take for granted, and the slightly more serious lessons I've had to navigate as I try to embrace recovery.

I have the keys to freedom (literally)

Kicking the list off with appreciating the small things in life. By this, I really mean ‘small’ things. For a while, I had got so used to every door being locked that I would just stand by a closed door, both at home and when out. Following many a confused look of ‘why does this princess think I’m opening a door for her’, I realised the power I now possessed. In the words of Elsa (I think) love truly is an open door. I could open the door into every room, the bathroom door, the garden door, the front door. No longer did I need the greenhouse (a story for another time, maybe…). Bliss. Further to that, should I wish to really push the boat out, I could also get my own scissors and move freely between these doors. My newfound freedom allowed me to not have to go through Fort Knox security to snip paper. Trust me, Christmas was a whole new experience in terms of wrapping. The only limitations on scissors seemed to be not using fabric scissors, madness.

Small trips out I once would have dodged became greatly appreciated. Having been out of hospital only a few months, I got a very confused look from the optician when I told him the appointment was the highlight of my day. On reflection, maybe that was why I was then prescribed glasses… But, these little trips out which once were mundane everyday tasks I now take with great joy and enthusiasm. To walk without the use of a wheelchair, not have to beg for time out or ‘earn’ the trip and freely access things I require without having to embarrassingly knock, wait and ask another for. There are many ‘small things’ that I have now come to value and the list could go on for a while. Be it the ability to shave my armpits or enjoy a morning coffee without it being recorded on a fluid chart, life’s small joys brought me a sense of freedom and achievement to access. I am so lucky to be able to have what I do, and my twelve months of freedom have taught me to appreciate these everyday things to a whole new level.

Dogs help!

Continuing the theme of small things bringing joy, in June 2024 I picked up my miniature wire-haired sausage dog, Fig. I obviously wouldn’t recommend choosing a dog as a discharge gift to oneself as they are big responsibilities, however, we were as a family also thinking of a second dog (much to Jonty’s disgust). Fig soon became and will always be my absolute world and reason to fight this illness. Suddenly, I was thrown into the world of doggy parenthood. Given how hard being mum to a puppy is, I really value my parents now for looking after me, as I must be a REAL pain in the arse… at 24… Despite her small build, Fig possesses a BIG personality. If it’s raining out, she’s pooing in. If there is the SLIGHTEST noise, we will soon know as Fig erupts with a torrent of angry barking. If she doesn’t want to walk somewhere, she will plant that booty down and wait to be lifted. But, with the cutest face and knowledge of how to repent for her sausage dog sins, Fig became part of the family the minute she arrived. Initially, this was much to the distaste of our Sprocker spaniel, Jonty. Fig has shown me that persistence is key, and even she has weedled her way into Jonty’s heart (and dog teepee from Lidl).

Given I study my illustration degree remotely, Jonty and Fig are my daily company. This company I would never have been able to have should I be in hospital where, apart from the occasional PAT dog visits, animals are not really welcome. Plus, given Fig’s surprisingly large appetite for a small dog, I don’t think a stay at an EDU would be necessary. Dogs bring you joy and love whatever the time (especially their dinner time). Wordlessly, a dog will support you and sit with you in the hard times. It is strange for me to think at one point I simply had a photo of newly born Fig laminated at the hospital dining table for motivation as I cried over Fortisips. Now, a year later, I am at home with her and she relies upon me to ensure her princess sausage dog needs are met. Though the not pooing in the rain is a *slight* issue, I’d rather have that any day than a fortisip in the EDU. So, another learning is to make the most of furry friends and find what brings you reason to get out of bed, as it is these meaningful factors that will fill your life with love and happiness. Fig has also helped me connect with others, as I have spent time volunteering at a local primary school with her. Our visits to ‘the nest’, which works to help pupils needing a bit of time out during the day, have bought joy to pupils, me, and her (as she gets A LOT of treats).

Finding meaning outside your ED

As already identified, my ‘12 months of freedom’ has shown me that finding a meaning and purpose outside your eating disorder world is what helps fuel recovery. This thought came to me whilst I was walking through the village I live in one day. A very kind lady stopped me and said ‘are you the lady who does the artwork of local places?’. She went on to tell me how she had purchased a print from me at a craft fair and how her daughter loved it. I walked home excited to tell my family of this comment which had made my day. I realised that in her telling me that, I felt more meaning and happiness than the eating disorder had ever given me. An eating disorder will promise a feeling of achievement. At the time I developed it, I felt incapable of achieving anything to a level I was satisfied with. I felt inadequate at doing normal things, criticising myself to the point where I didn’t want to try anything due to the intense feeling of failure I knew would ensue. Through developing my eating disorder,  I found something I thought would bring me control and achievement. I could control numbers around me, micromanage all aspects of life ruled by the calculator in my head that was constantly on. The false illusion of success I thought that I would one day feel never came, and with an eating disorder never will. The harsh truth is an eating disorder will keep going, fuelled by the belief you are not good enough, until you are dead. Those few words of kindness the lady gave me offered me more of a sense of meaning than the eating disorder ever gave me, and this is something I try to remember when I feel like giving up. People will remember you for the things that make you YOU aside from an eating disorder. No one has ever stopped me and congratulated me for knowing the calories of most menus or how many steps it takes to get to the coop. These things that fill your time when you are ruled by your eating disorder are the least interesting things about you. To be honest, they’re pretty boring. There is a false perception which maintains an eating disorder that it will bring you a final sense of success and you will one day think I’ve completed this goal, now I can give it up. But, living in the monotonous world driven by your eating disorder will never bring you the sense of joy and meaning that living outside the boundaries it confines you to will.

In brief, my first three learnings to reflect on are inspired by the freedom of life outside, yet this freedom is still tainted by the fact that being out of hospital does not mean someone is cured or necessarily doing better. An illness like anorexia still looms over you outside, and at times fighting it out of hospital is even harder than when in hospital as you cannot transfer ‘guilt’ for meeting basic needs that the illness doesn’t deem you worthy of doing. But with the help of finding things that bring me more meaning, whether this be a paintbrush or an entitled sausage dog, I am gradually finding my way. If you found this in any way interesting, stay on the lookout for further reflections on my ‘lessons of the outside’. As with most things, my fleeting concentration span has meant this is well overdue, but hopefully others in this series will follow!