IN SCOTLAND, around 180,000 of us have been “shielding” by staying at home during the Covid-19 pandemic. For me this has evoked mixed emotions; relief and gratitude that I am being protected, sadness that I need to be and despair about what this means.

The last few months have been emotionally challenging, reminding me that I am vulnerable and dependant, limiting close contact to my immediate family while removing the most basic freedoms. Recent relaxation to recommendations for those of us shielding is very welcome.

However, emerging from our “safe bubbles” raises anxieties of its own. As we move from the acute to the chronic phase of the pandemic we need to be included in conversations about how to manage the risk it presents to us. For me, a global pandemic of a highly infectious, deadly virus that attacks the lungs and the cardiovascular system is another blow in a lifelong fight for survival. I have been dependant on pioneering cardiac care since being fitted with my first pacemaker at 11 days old at Glasgow’s Yorkhill Hospital in 1978, a world first at the time.

Early devices were fickle and by the age of seven I had been fitted with five, each by thoracotomy (breaking the ribs to access the heart). They also limited my heart to a fixed rate preventing physical exertion until, aged 12, I benefited from a variable rate pacemaker. A “hole in my heart” was repaired during my teenage years, requiring open heart surgery and I was fitted with my 11th device two years ago. It has been a difficult, at times traumatic, journey.

At primary school, during PE lessons I sat on the wooden benches that ran along the side of the gym hall watching the other children as they swung from the ropes on the climbing frame, leapt across the wooden horse and played ball games. During the winter, I sat in the classroom at playtime because my fingers and lips turned blue in the cold. In the summer, I watched the other girls play with skipping ropes. I envied them when they arrived at school with glitter, from the dance display they’d all been in the night before still shining on their faces.

I felt different confirmed by these unusual life experiences and, at times, by other children. Such as the boy who asked, in front of the entire class in high school, if my dad had to “wind me up each morning” and if I needed to be “jump started” when my battery ran out. Even when people were being nice they were often clumsy “but you look normal”. It’s taken many years and lots of therapy to see myself as a normal person who just happened to be born with a heart condition. The pandemic risks opening old wounds, undermining coping strategies and presenting obstacles to usual support. Ableism, already everywhere, has been re-energised with narratives to reassure the healthy majority such as “the virus only kills people with serious health conditions”, while talk of “herd immunity” has been frightening and hurtful.

Luckily, I have been able to work from home and my husband has been able to shield with me. But I have missed my wider family, friends and colleagues, and I worry about the impact on our son and managing risk when his school returns. Chronic health problems increase vulnerability to anxiety and depression while human contact, one of the most protective factors for mental health, has been significantly restricted. Further, when required we need to access the specialist medical care we need in a timely fashion which can be problematic at the best of times.

I’ve spent the last eight years advocating for improved healthcare provision and psychological support for Scotland’s congenital heart population after several life threatening issues accessing care. Concerns about being able to access both emergency care (with or without Covid-19 symptoms) and the routine care we rely on (without becoming infected in the process) are very real.

Yet, while living with a serious medical condition can be tough it fosters a greater appreciation of life and loved ones and hones resilience. We are used to fighting to live independent, meaningful lives despite many obstacles. I was raised to be pragmatic, to accept what can’t be changed and to focus on what can.

As a child, I loved reading, drawing and music. I have carved my own path and live a full life with a lovely family (my husband, son and our Scottie Lass) and a rewarding career as a psychologist.

In many ways we are well placed to manage the current crisis; experts in self-managing our health, threat to life and dealing with uncertainty. As life slowly returns to normal for everyone else, we need to be involved in conversations about how to manage the risk it presents to us.

We need an inclusive and strategic approach to re-build our confidence in the world based on the best emerging evidence, such as by employing tracking and testing to facilitate localised lockdowns.

We need individualised, flexible plans to support us to stay safe, considering the very real risk, while enabling us to live as normal a life as possible. After all this is what we do best, we have been practising all of our lives.

Dr Liza Morton is a Chartered Counselling Psychologist and health campaigner .