I originally wrote this story when I was annoyed! I was tried of the isolation that had been imposed on me at hospital by infection control measures. I was born in the 70’s with ‘low-fat, high protein’ diets and the mortality age of someone with CF (Cystic Fibrosis) was 21.
This story is the train journey to the Royal Brompton Hospital for a 3 month review appointment. I was trying to highlight the distances that people with CF have to travel to a specialist centre and how tiring and challenging that journey can be.
CF infection control guidelines were updated in the early 2000’s for medical settings, and meant that people with CF had to be kept in isolation from each other. No longer able to sit in waiting rooms, talk in hospital corridors and in some cases live apart from siblings. A world apart from the 70’s and 80’s where all these things were possible and ideas and thoughts could be easily swapped between people living with the condition.
Infection Control Measures are scientifically researched measures that stops people with CF transferring their bugs to other people with CF. But it also creates a feeling of isolation and is not a workable solution in the real world.
The train journey illustrates how difficult this practice actually is and how easy is it to be exposed to coughs, sneezes and wheezes. And who knows if any of these people on the train have CF as well?
But Isolation, for me, stopped the camaraderie and shared experience of CF. I needed a new outlet…
Since about 2015, I have been a volunteer with the CF Trust, doing varied tasks as a lay reviewer of CF Research, lending my experience to help with pioneering research trial design and generally giving my voice to lived experience of Cystic Fibrosis. It’s given me back a way to talk and discuss CF with other people who have the condition, using video calls to describe what the CF landscape looks like and how Modulator drugs such as Kaftrio, are changing lives and giving hope to lots of people.
The volunteering work has changed the original plan for this story. Instead of being a piece created to show my annoyance I am now writing this to show the evolution of CF, a history of what was and what is now.
And with the hope that future generations of people with CF will one day be encouraged once again, to swap thoughts and their livid experiences of Cystic Fibrosis in person.
Pop back soon to read the next chapter in this story – The CF Clinic and how it has changed.
