When COVID-19 hit I was already in hospital and had been for 3 months. Not a normal type of hospital, it was an eating disorders unit, not a normal type of patient (ill - wanting to get better), I was fighting the system, held against my will. Indeed when I arrived on the unit I honestly thought it was a joke and then when I was then sectioned I thought I was in a bad dream and refused to take off my coat or shoes for the first 3 days, I slept on top of the bedsheets and didn’t unpack for 2 weeks because I thought if I wake up I want to be ready to leave straight away. The fact that I was in a wheelchair for the first few weeks was probably the only thing that stopped me trying to run away. The trauma of the admission lingered for many weeks. On one occasion many weeks later as I settled in I went to sleep and woke up but thought I was back at home and to find myself still on the unit was incredibly distressing. However, the staff were very kind and the specialist eating disorder consultant who I had long admired from afar was exceptional in her care and understanding but subsequently made some promises about my treatment which the pandemic completely trashed.
Re-winding – slightly….2019 hadn’t been a good year for my health either mental or physical – I had already been in a medical hospital on a section in the July for re-feeding and things slid down from there so even though this admission felt to me like a complete joke to everyone else around me it was inevitable – even back in July.
So mid-December to mid-March, under section my treatment gradually worked towards more independence and more trust off the ward ready for discharge. I started having weekends at home in preparation for discharge in mid-April. However, I cheated the system, my weight had plateaued from end of January and I knew there was no way that by mid-April I would get to a healthy weight I did start to panic as I realised time was running out – I felt so stuck and conflicted as my discharge date got closer and the realisation that actually rather than cheating the system I had actually cheated myself finally dawned on me.
At the beginning of 2020 within the artificial bubble at the hospital we got word about this virus, we had to spend endless hours in the lounge after meals and watched the news but because we were in our own weird world it was hard to actually believe it. Until we literally had no choice.
At the beginning of March word got out that things were going to change BIG time, for all of us. We were told that other units had already closed but that wasn’t going to happen here but we had day-patients as well as in-patients at the unit and there was a risk to the unit every time someone went outside and came back onto the unit. The potential for jeopardising the health of patients was a grave concern. Also staff on the ward were being pulled into other departments and other staff would suddenly go missing because they had to isolate due to contact with those who had been tested positive.
Then in the second week of March there were lots of meetings going on and rumours were spreading about what was going to happen. Then suddenly all the day patients pretty much in one day all went, never to return, not even the chance to say goodbye just gone. Some had been on the unit for months and then become day patients and now……gone. Some of the day patients had meetings and were told that they now had to become in-patients and then for us in-patients we had meetings too.
Basically for those who were already having some home leave it was going to be run like this…go home and then come back once a week to have bloods done and be weighed and assessed then go home and come back again. That was pretty much it. So from 6 meals a day, therapy and group meetings and support to nothing but do come back and be weighed and have bloods done.
I was absolutely furious. There were no support meetings at all with OT or dietitian about how to manage and I was so angry when I heard this was the plan that I demanded to be allowed to leave straight away – a section 17 was hastily done and I left. I didn’t even return later to pick up my stuff I got someone else to do that. I was so upset and angry, the only reason I had started to comply with treatment was because I had been promised full support to get back to a healthy weight and therapy to help me move on from the anorexia. (On the ward this was called ‘full recovery’ as opposed to ‘personal recovery’ which was for those who weren’t ready for full recovery but had negotiated a healthier weight to get to before discharge) I wanted/needed full recovery, this was about my 9th time in hospital, this had been an issue for me from the age of 18, I was now 51, I was a mum of 2 teenage girls I had to be supported to get to full recovery - one of my daughters also had mental health struggles and was in a CAHMS unit from November to April so I was a carer too …..but it didn’t happen at all.
On the ward I had seen people so much more relaxed around food than I was, almost enjoying it and whilst I would cry I would also wish to get to that place in recovery and believed finally it would happen for me too. Patients further on in their treatment would be sitting on a separate table away from the staff, laughing and chatting like pretty normal people….. when I left I was still on the supervised table, sometimes in tears, sometimes having liquid nutrition as I hadn’t finished the food in time I never got to the place I thought I would get to. So when I left I had a lot of mourning to do for what I thought would happen and for what I believed now never would.
It took a while for me to realise how massive the whole pandemic thing was and that maybe it wasn’t the fault of the staff unit that they had had to clear the ward, that people were dying of COVID-19 and the whole of the NHS was on its knees. I suppose all I could see was that I had had my dreams of full recovery completely squashed and now I would never ever get to where I wanted to be.
Looking back part of the problem was the unit didn’t explain the pressure they were under by the powers that be to clear the ward of anyone they possibly could and they had probably panicked. The consultant was on annual leave too so not there to manage the situation and to be fair she did contact me a lot to offer me support after I left.
However, I was so angry and upset still, it took me a long time to calm down at all. I put a lot of trust into the system which I felt had been totally misplaced, I felt has if I had been lied to and the way my leaving had been mishandled meant that I was reluctant to take even the piecemeal support that was later offered. I was just not interested.
I thought that after so so long struggling, since my teens that this was finally going to be the end and that this was going to be it and I would be free at last, that was what had been promised and agreed but worse than that I had been ‘thrown under a bus’.
Over the next few months it was clear to me how huge COVID-19 actually was. I had to muddle through myself and in a weird kind of way I was so anti the ward that I ate just to keep out of the system, I was still under a section on a long leave section 17 so I was not free from the ward just away from it. But my eating was all over the place and I certainly wasn’t recovered.
I kept myself over-busy with jobs in the house and garden, I joined a sewing group and made over 100 laundry bags for NHS worker uniforms just keeping my mind occupied and in that I found a real release but my mind was contaminated by the trauma of being ill, being in hospital and then the sudden ‘abandonment’.
I had CAT therapy with my therapist from the unit over zoom but more often than not I wouldn’t have my camera on OR I would have my camera on and would wear a face mask so my face couldn’t be seen. I was pretty determined that my therapist wouldn’t have any clue about what was happening to my weight – as far as I was concerned if I wasn’t going to get support with that when on the unit then why should I let them know how things were going now I was off the unit.
CAT carried on for the rest of 2020 and into 2021 but it was marred by my anger at the system, my inability to be honest about how things were going and a panic about what might happen if I was more honest.
Having said that being back home certainly did feel good. Back with my family and my puppy and in our own bubble we muddled along, My elder daughter didn’t have to do GCSE exams which was a plus but we mourned the loss of her graduation and end of year ball with her -both done via zoom – not quite the same!! As a parent I also had to navigate my younger daughter leaving a CAHMS unit after 5 months and getting her into a special school into year 10 after completely missing year 9 but though all of this I have realised what an incredible husband I have, he completely stepped up when I fell down as a mother so dramatically.
The other area that I have had to try and re-navigate in 2020 due to the pandemic is my place in the world. Before the dramatic downturn in my mental and physical health I was a social entrepreneur having set up a charity working in schools with literally 100s of families of 11-17 year olds. So whilst navigating a rather haphazard return to normality with my health I was also trying to fight for the survival of the charity which I had poured my heart, soul and all my savings into over the last 7 years. With schools closed from March and their tentative re-opening in September I have seen years of hard earned relationships with schools slip through my fingers like sand through a sieve. I have gone from finally almost having enough money coming in to pay myself to no money coming in and receiving Universal Credit.
I feel that although 2020 seem to bury the charity I grew from nothing and my chance of full recovery I need to keep hope alive and change my perspective from ‘buried’ to ‘planted’. To give the future a chance because for every end there is always an opportunity for a new beginning.