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Living with cystic fibrosis in a pandemic is tough, but we have lived this for some time

Patricia Duffy-Barber, Chairperson of Cystic Fibrosis Ireland says people CF are nervous, but they’re doing their best to get through.

Patricia Duffy-Barber

IN THE EARLY stages of this emergency, I noted a comment online. ‘How you feel in the middle of the Covid-19 pandemic is how a cystic fibrosis patient feels every day’. 

Cystic fibrosis (CF) impacts a number of the body’s organs but its hallmark is a respiratory illness. It is second nature to us that good respiratory hygiene and hand-washing prevents us from getting infected or infecting others. 

As someone who lives with CF, and now in my 40s, I clearly remember mum changing clothes when I’d come back from the hospital and wiping down groceries before popping them in the cupboard. History is repeating itself right now for me. 

Our community’s reaction to the pandemic has mirrored the wider public reaction but with some subtle nuances. There was initial anxiety regarding the impact on the supply of medicines and food but that was alleviated following confirmation that supply and distribution would be unaffected. 

We withdrew early

From early March, people with CF began instinctively minimising their contact with the outside world, prior to the official advice. I adopted a self-quarantine approach and was fortunate to be able to work from home. I work in healthcare and my colleagues have been redeployed to Covid-19 roles in testing and other frontline patient care.

Each subsequent Government announcement curtailing public movement was greeted positively by the CF community. Some parents opted to remove their CF children from school shortly before their closure was announced. Prior to “lockdown”, there was a sense of frustration in our community as some members of the public tested the limits by venturing out en masse to scenic locations on a sunny day. 

The subsequent ‘stay at home’ announcement brought a huge sense of relief. For some people with CF, the advice regarding cocooning is crucial in mitigating risk where they live with a key worker who has to go out on a daily basis. 

Parents and people with CF understand the concept of community transmission due to being at higher risk of picking up seasonal bugs. We are always conscious of an increased likelihood of catching whatever is doing the rounds in preschools, schools, colleges, public transport, and at work. 

Covid-19 actions

Workplace culture is often to ‘soldier on’ and turn up when suffering from a cold or ‘flu. It’s with the best of intentions but ignorant to the danger presented to colleagues with underlying health concerns. Hopefully, in a post Covid-19 world, this culture will change radically to one where workers are more socially responsible and employers encourage sick employees to stay at home.

Recent weeks have been tough because I dearly wanted to visit my Dad who celebrated his 80th birthday in March. He has vascular dementia and underlying heart and lung conditions. But I had to think and act as if I had the virus. So, it would have been too much of a risk. I know that he is safe at home and we are keeping in touch by phone. 

Having CF doesn’t increase the likelihood of contracting Covid-19, but there is an increased likelihood of serious complications. That’s particularly the case for some of us with lower lung function or more complicated CF. However, there have been few reported cases of people with CF contracting the virus, and indeed there has been one widely publicised case of a CF patient making a recovery in the UK which is very good news. 

In general, people with CF are used to the reality of catching a virus. Treatment for typical ‘flare-ups’ involves stepping back from education or work commitments, sport and socialising, to prioritise rest and undertake intravenous antibiotics, sometimes at home. Indeed, it reduces many of us to dramatic social distancing for the duration. 

Depending on the level of infection, and disease progression, sometimes extended hospitalisations for specialist care are required. We have actively sought isolation beds in hospitals, recognising that when we are at our sickest, we cannot afford to contract something from a nearby patient. 

This is familiar to us

The other side of the coin is that there is loneliness inherent in hospital isolation which can sometimes last months. Many of us are facing similar mental health challenges in trying to cope with Covid-19 self-isolation. How we’re truly feeling in the middle of a pandemic seems to ebb and flow. Many of us are recognising that despite feeling safe at home, when out for a walk, we are feeling a low level of anxiety which is even more keenly felt by our people who cannot afford a serious health emergency. 

People are reporting benefits from limiting their exposure to Covid-19 news. About one-third of our CF adults are involved with our online Facebook group. For many years, it has been a conduit for information and a way to support each other in real-time. Reaching out for professional mental health supports is also an option and people can link with Cystic Fibrosis Ireland to apply for a counselling grant.

None of us has been here before. But there is an emerging sense from the CF community of ‘it’s a tough stint, but we’ve got this’. Both recognising what is within our circle of influence and knowing that this period in our lives will pass is important in managing our mental health. Practising gratitude journaling, resourceful cooking and creative baking, finding humour and using meditation to help retain normal sleep routines help. Those of us with children are focussing on surviving without the structure of school and making positive memories of our unexpected family time together. 

We remain alert and conscious of the risk to us in this pandemic. We are not unfamiliar with social distancing as a necessary way of life from time to time. We know that we can best manage the risk by ‘staying at home’.

I am beginning to feel people with CF might have a slight advantage when it comes to coping in the middle of a pandemic. 

Patricia Duffy-Barber is Chairperson of Cystic Fibrosis Ireland (CFI). Unfortunately, CFI has had to cancel its 65 Roses Day collections today, Friday 10th April, due to Covid-19. This is its national fundraising day and was targeted to raise €200,000 to help fund essential supports and services needed more than ever by people with CF at this time. You can support CFI this 65 Roses Day by donating online at 65RosesDay.ie

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Patricia Duffy-Barber

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