COVID-19 & Adrenal Insufficiency: What Now?
Written in collaboration with Addison's Disease Self-Help Group
A survey of over 600 people with adrenal insufficiency has found that around 80% of respondents were uncomfortable about the relaxation of COVID-19 related restrictions that began in England on the 19th July.
Working together, The Pituitary Foundation and the Addison's Disease Self Help Group asked you, our members and social media followers, to comment about your feelings and plans now that many pre-COVID-19 freedoms have returned.
In our survey, 1 in 10 people were feeling happy and confident. ‘Catching up with lost time’ was mentioned many times in this group with one person commenting: "Looking forward to getting a sense of normal. I feel like I've missed a big part of my 20s". While others stressed their view that it was important to get life going again: "I’m ok with it because as a vulnerable person I protect myself. Everyone else should go on living." Some things this group were looking forward to included being able to see and hug people, wearing masks less often and travelling more. Some were hoping the changes would help their mental health and allow them to return to church, pubs and clubs or hobbies.
Uncertainty and fear
8 out of 10 of those taking part have been feeling nervous, cautious, scared or vulnerable. Others felt isolated, uncertain or unsafe. Feelings of being left behind were echoed by many, with one commenter saying that they felt "Unhappy, unsafe and forgotten as [I'm] clinically extremely vulnerable." For those with families the new freedoms have brought more worries: "As a single parent, I am incredibly anxious for my health and my child’s well-being if I fall ill." For some of those who'd been shielding there seems to be a sense of stepping back again, with one respondent adding "I will now have to stop going to shops and [stop using] public transport, which I only just began to do again". This group were, in the main, intending to keep following previous restrictions and behaviours in a bid to stay safe.
For those still deciding what this will mean for them, trying to make sense of all the information we're receiving about the progress of the pandemic was hard work: "Really unsure as double vaccinated but infections remain high and [it’s] hard [to] get clear information."
Guidance from the experts
Commenting on the easing of restrictions and the replies to our survey, Dr Sue Jackson, a chartered psychologist with a particular interest in endocrine disease and mental health, said:
“In easing the restrictions the way they have, the Government are basically saying “over to you” to the general public. There’s no mandated set of instructions, we’re expected to make appropriate common-sense decisions about how to manage the risks associated with the pandemic by ourselves. The problem with this approach is that we each assess and respond to risks differently, and that leads to a feeling of uncertainty about what we’ll find away from home, particularly for people with long term health conditions. Uncertainty is probably the most challenging thing that humans have to cope with; accompanied by a feeling of a lack of control, uncertainty tends to make us anxious and vulnerable. So it’s not really surprising to see a lot of people with health conditions responding cautiously to the easing of restrictions, saying that they will be going out less and sticking to the previous guidance of “hands, face, space” when they are out and about. It’s a very sensible approach to the challenging and changing situation we find ourselves in.“
The Pituitary Foundation’s Medical Committee, made up of 23 medical professionals, specialising in endocrinology and related fields gave the following advice, including the ADSHG Clinical Panellist Professor John Wass:
Those with adrenal insufficiency fall into the vulnerable category, and are not at significant increased risk of contracting coronavirus. However, they may become more unwell if the virus is caught, despite having their two vaccine doses.
Lifting restrictions does not mean that the risks from COVID-19 have disappeared. Instead it marks a new phase in the Government’s response to the pandemic during which people need to manage the risks to themselves and others as the country learns to live with the virus. Building on the updated guidance on meeting friends and family, announced as part of step 3, the Government will provide advisory guidance on how people can manage the risks to themselves and to others. It sets out how the following behaviours are beneficial:
- Meeting in well-ventilated areas where possible, such as outdoors or indoors with windows open.
- Wearing a face covering where you come into contact with people you don’t normally meet in enclosed and crowded spaces.
- Washing your hands with soap and water or using hand sanitiser regularly throughout the day.
- Covering your nose and mouth when you cough and sneeze.
- Staying at home if unwell, to reduce the risk of passing on other illnesses onto friends, family, colleagues, and others in your community.
- Considering individual risks, such as clinical vulnerabilities and vaccination status.
There are so many factors to consider when deciding how you want to move forward, made even more difficult by the lack of clear data on what is or isn’t safe. The most important thing is to remember that however you may be feeling, these emotions are valid and you should take whatever precautions you feel are right for you. Everyone is in the same storm, but a different boat: some people want to get out and meet friends to protect their mental health, some want to shield to minimise the risk of contracting the virus, while others again have jobs or responsibilities that prevent them from doing so.
At this stage of the pandemic we all need to do what feels right for ourselves and those around us. Remember that this isn’t easy for anyone and we should be kind and patient with ourselves and others.