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Even before Covid-19, due to my diagnosis, I avoided places that I had formerly frequented such as pubs, where I had taken part in karaoke nights and even going round to see friends to some extent. I was unable to have the flu vaccine and the flu would have been very serious for me, so I lived an isolated life during the winter months. I had good friends but there was a sense of living in another world to people who did not have to be so cautious about catching infections. I also had to instruct people at my church group to let me know if they had a cold or other symptoms of infection so that I could avoid the meetings on those occasions.
In terms of COVID-19 shielding, I have been shielding ever since my transplant in February 2020. I am still shielding and will be for the foreseeable future, even once vaccinated, as it is not clear whether I will be able to mount a response to the vaccine. I will definitely be shielding this Christmas as it would be too unsafe for me and for the people I visited to use public transport.
I am shielding because I am on immunosuppressants which can make infection more likely and more serious for me. Also, if I were to get an infection, I have co-morbidities such as proneness to heart arrhythmia and kidney disease which makes being unwell more dangerous for me. It could also cause my immune system to malfunction causing an autoimmune response.
In general, I have coped quite well with shielding as I am very used to my own company and more recently being able to use Zoom. I also get a lot of support from my church home group. It has been increasingly hard recently as society is relaxing about Covid. There is a sense of alienation as people’s increased carelessness about Covid means increased vigilance for me. Before at least everybody was in the same boat, but the sense of alienation is strong now. Recently I had to travel due to a family situation. I had to spend many hundreds of pounds on taxi fares going up and down the country as it was unsafe for me to use the train.
The more open up society is, the more cautious I have to be. The feeling of constant danger and the need for vigilance is a constant stress to me. Even when I visit the hospital – as I have to – I see people going in and not washing their hands with no staff now present to advise them to do so. There are often more than three people in the lifts at a time, ignoring the signs. I am left wondering after my visits whether I may have caught Covid and the fact that I wouldn’t know if I had for a few days, so the worry extends beyond my appointments. There are some situations I can avoid, and I do, but there are necessary hospital attendances I have to make and these are riskier now people are behaving as if Covid has gone away.
My mental health has definitely been impacted by my time shielding; my stress levels are higher due to the constant vigilance now when I am out. It can be depressing not being able to foresee a time when it will end. Obviously, I only see people physically when I go for occasional socially distanced walks with friends or when I go for weekly hospital appointments. I am good at being alone and I keep in touch via Zoom, but it is becoming more difficult.
Over the months of shielding, I attended Leukaemia Care’s haematology support group on Zoom. It is obviously tricky to share when everyone is at different places in their lives and treatment but it’s positive and I can see how the group may be a vital source of comfort, support, and contact for some.