Blogs 17.07.2020

A personal narrative of my COVID experience

One of the Experts by Experience supporting the Prevention and Early Detection Theme of ARC EoE, the University of Hertfordshire shares her reflections and experiences of life during COVID 19. Her personal narrative shines a light on the value of community and the importance of hearing individual voices from these communities to guide what, how and why we do research.

I am an Expert by Experience supporting the Prevention and Early Detection Theme of ARC EoE and the University of Hertfordshire. I live with my parents who are in their mid – late 70s in a rural Village of around 1000 people.


Before COVID my life really revolved around my Expert by Experience work and involvement in Church and community activities so mostly all outdoors and with people.  I used public transport to get around.  When COVID struck, like most people, my diary cleared within a few days and my life moved indoors and on to my laptop and phone.


There was initially extreme anxiety amongst my community groups about how to identify the vulnerable, a great desire to help, and a lot of pressure to do something.  This was very difficult as we were in a pandemic and we were very concerned about spreading infection.  It felt very powerless.


Before COVID I ran a popular weekly craft group which also provided a lot of social support.  Fortunately, one of the Group members set up a local craft group on Facebook immediately on lockdown and a lot of members joined.  Those not online I have continued to contact via phone, text and email regularly so we keep connected until we can meet again. 


Then the authorities banded together and the Church went online and continued the Food Banks which was all great.  I contacted some of the local groups to see how we could work together and  started mapping my community in terms of what resources were available to support people as I felt a coordinated community response was the best approach to pool our resources and identify potential gaps.  For me generally though it felt like a disconnect between the authorities and residents.  I felt that we were all worried about the same thing, the vulnerable and people falling through the gaps but somehow, we were not able to join up in much of a practical way. 


I also found there was also a big confusion over who the vulnerable were.  Some people did not see themselves as vulnerable while others not seen as vulnerable clearly were. Even though my parents are in their 70s, it was very difficult to know whether they were eligible for supermarket priority slots (not that we could get any anyway and we soon gave up trying).  This caused a lot of tension and arguments when the food started to run down as to how to get supplies as no one wanted anyone to go out.  A friend whose only method of communication was the phone ran out of phone credit early on and I spent the rest of lockdown concerned about them until I could go and knock on the door again once restrictions had lifted.


Fortunately, quite early on, our local supermarket began home delivery by email order and card and a local business set up a fruit and veg stall on one of the local farms. This helped greatly in the early days of lockdown as getting fresh supplies was very difficult.  Some people I know felt this gave them more independence rather than relying on others to get food for them.  Our local shop was also very supportive of our community and local pharmacies did home deliveries of prescriptions.


After much stress and feeling powerless being told to stay at home and also wanting to stay safe and not spread infection, I finally found the best way to support my community was from my laptop and phone, sharing official info from the Government website and our Councils, local Library resources, Neighbourhood Watch, local Surgery Patient Participation Group, Local Resilience Forum and Third Sector contacts and other trusted sources via our community Facebook page, email and phone.  I was able to quickly pass on public health info as well as info on local supplies as resources and information emerged.  I also printed official COVID posters for the local notice boards as nothing was appearing on the council boards due to the situation.


From the beginning of lockdown I started to use social media more for public information but found the COVID information very useful but the volume of it was becoming overwhelming and decided to also post things to help motivate, inspire and lift spirits particularly in the depths of lockdown such as daily photos of flowers from the garden, a Virtual History tour using our village photo archive and an armchair quiz. These have been very popular and I found it a good way of checking in with people I knew as they responded to posts. It was also useful to help get lost items of post redelivered and get lost cats back home.


Before lockdown I was getting increasingly anxious about the situation and was very happy once we were in lockdown as I felt safe.  After some time, I was worried that it felt too safe and I was then anxious about going out as most days I stayed in.  The outside environment felt very unsafe as germs could be anywhere, on surfaces, in the air and it felt that nowhere was safe.  When I did go out into the Village I have known all my life, it felt very strange, quite disorientating and even crossing the road seemed daunting. When it was mentioned that lockdown was going to end then I became very anxious and this has only increased over the weeks.  I still hardly go out.  I always wear a mask when I am near or with people even though I know nothing about whether masks are effective or necessary and it is probably starting to look a little odd, I feel safer with one on.


Throughout lockdown I was terrified I had COVID as I was quite unwell for some time early on with digestive symptoms not listed by the Government but which were reported in the media.  It was difficult to tell if they were COVID or stress related and I was not sure what to do. I had telephone consultations with GPs and found these excellent. I would like this option to continue.


I have found a lot of official advice to be confusing particularly now that restrictions are lifting and am not sure who I can meet as the situation is changing rapidly.  There is a lot of pressure from friends who are bored, fed up and want to meet up.  Some friends have been asking to meet up for weeks but I don’t want to go out as I am not sure if it is safe. It feels now that they might think I am avoiding them when really, I am afraid. Some friends have been shielding and are highly anxious, afraid and are not sure how to begin to take those first steps outside.


I look at the terrible things which are happening as reported in the media and feel even more afraid of going out.  Not knowing what to expect when going out, how I am supposed to behave, how other people are going to behave, what shops, banks, etc are open, opening times and especially whether toilets are open makes it difficult to even think about going out to Town centres and whether it is actually worth it.  I used to get public transport but cannot imagine doing this now which also makes it very difficult. 


Despite being highly anxious about technology which made it difficult to try or use Zoom at the beginning of lockdown, I am so glad that I persevered with all the problems of anxiety and unstable internet connection etc as it has meant that I have been able to continue with a small amount of work, some community activities, access webinars, creative sessions and undertake online Spot the Signs Suicide training.  Zoom has opened up so many opportunities and now I am afraid of having to go back into buildings for any reason and want the online world to continue. It also cuts out all the problems, the stress and tiredness of travelling on public transport as it enables me to manage my health much better.  I think it makes things more accessible for those who are disabled, managing health conditions or who have caring responsibilities.


I think people are going to need a lot of support: getting acclimatized to going out again and knowing what to expect and how to behave when outside. Help and support adjusting to unemployment, new work environments, working from home etc. Support with bereavement, loss and change. 


Being indoors every day during lockdown caused a lot of tension in the house as everyone was anxious about the situation and doing anything was so difficult.  Constant hand washing, checking for symptoms, checking for information on the news, talking and thinking about COVID.  We had lots of arguments over food and going out for supplies.


COVID has been quite traumatising, watching the horror of the situation unfold on a global and local scale.  Doing anything at all in the early days was so challenging and it felt like it was all I thought about.  There has been such a lot of loss that I think it will take a long time for the full impact to be felt and dealt with.  Fearing for the lives of friends who have been ill with COVID and not being able to see them felt very powerless and am not sure how to grieve the loss of a family member when we were not able to attend their direct funeral early on in lockdown. 


It has been difficult to plan the future when everything is so uncertain and there seems no end to it. The foundations of our lives have been and continue to be affected; our surroundings. employment, housing, the food we eat, money and resources, transport, education and skills, families, friends and communities have all been affected. All of these practical everyday concerns are connected to mental health problems and will be greater and need addressing.  Our community food bank definitely saw a big increase in demand.


At the beginning it seemed that we were all in it together and that there were probably few people who were not thinking about COVID. Then it became apparent that there were great divides, between generations, income groups etc that were all differently affected and that some had not been affected at all whilst others had lost so much. For me it shone a spotlight on all the problems in our society such as poverty which were greatly exacerbated by the situation. 


Technology poverty was also greatly apparent.  One day everything was outdoors and people, the next day everything went online and the whole world just vanished.  Councils, Churches, shops, services all shut their doors and put their services online.  My great concern throughout was for those not online and I feel that more needs to be done now to support people to get more connected in as many preferred ways as possible.  Teaching people how to text, setting up email accounts, teaching skills around accessing online resources and services, video conference technology, as well as connection through neighbours, local groups, services, etc

Community became more important than ever.  We need to strengthen the links and foster greater connections between neighbours, community groups, third sector, businesses, faith groups, services etc.

Keeping what has been useful; the use of video conference technology for meetings enables people who generally use public transport/or are unable or find it difficult to leave home to participate in involvement or research work e.g. disabilities, health conditions, carer commitments etc.  Explore the use of technology for online training resources for the public on all forms of healthcare, caring, support groups might be useful to continue.