In childhood Liz had frequent chest infections, coughs, sinus problems. So when she started coughing again, years later, she didn’t pay much attention. Liz was also having what she now know is the typical symptom of breathlessness when carrying bags or a suitcase, walking up slopes and stairs.
Liz Robertson, 65yrs, from Maidenhead
Liz was diagnosed with non-specific Interstitial Pneumonitis (NSIP) in 2011. This was subsequently amended to RA-ILD when the inflammatory arthritis was diagnosed two years later.
Liz talks about the impact of having a persistent and uncontrollable cough:
Cough affects every part of my life in some way or other. I avoid situations where I think cough might disrupt what I want to do.
I will plan a zoom call in the later morning because that’s my safest time normally. I don’t eat food that causes choking problems in a public place (rice, toast, apples). I check if a friend has lit her wood burner and don’t go to see her if the answer is yes. I have stopped using any kind of perfume as so many seem to irritate a cough. In pre-Covid days visiting friends or a restaurant I would make sure that I sat somewhere that I could easily escape outside or somewhere else so that I didn’t embarrass myself and everyone else.
The biggest change it made for me was that I couldn’t continue working. My husband and I built up a company over 30 years and it became more and more difficult for me to visit clients and have a sensible discussion or even talk to our staff or have a phone conversation.
I could no longer make presentations at conferences or take meetings.
One day a long-standing client said to me that she was really worried that I sounded so ill with my cough (even though I didn’t feel ill that day!) and questioned if I would be able to fulfil their request. It was obvious that I was risking damaging the business. After much heart-searching we decided to give up the business earlier then we would have chosen to do because of my general health deterioration, but largely because of the cough. A very hard decision for both of us and especially my husband Bob.
My husband and I started a language training and translation company in 1989 that provides corporate language and cultural briefing services worldwide and a full translation service for medical, legal and other documents. A critical part of my work (which was essential to the well-being of the company) was daily contact with clients, face-to-face and on the phone. I was also involved with international industry associations and enjoyed traveling for work and giving presentations. Sadly, none of this was possible with the cough and increasing health issues and therefore we retired early.
In my current life it affects sleep. On a bad night when you have to sit upright and try all the tricks to calm the cough, you end up adding to the exhaustion of the underlying condition.
Pain in the intercostal muscles, back, shoulders, neck can all result from cough. Sometimes it is difficult to work out if a chest pain is the result of cough or infection or collapsed lung etc. Friends have had cracked ribs from PF cough. So you start to worry about these things instead of taking control of the cough.
Cough is the audible representation of our terminal condition. It is inextricably linked with breathlessness. It makes us think of our mortality and wonder if this exacerbation is going to be the final one. And everything that goes with that. But the worst thing for me is knowing that my husband or family are thinking similar things when they hear me coughing badly. It’s hard on everyone.
I was very fortunate to attend a support group session through the charity Action for Pulmonary Fibrosis pre-Covid where a speech and language therapist with specialist knowledge of cough gave a talk and encouraged us to ask for a referral, which I did. I had two sessions which helped me to understand more about the anatomy of cough and how some (not all) kinds of cough can be a self-perpetuating habit.
Support groups through charities like Action for Pulmonary Fibrosis really are so important and I wish I’d found my one earlier.
There are talks about the conditions which are really useful. But for many of us the main thing is to chat with other people and carers/families who understand the challenges.
Friendship, trust and a cup tea (real or on Zoom) make a real difference to how we feel.
> Information on managing a pulmonary fibrosis cough