Take a moment to imagine your best friend. The person who truly understands you, who you can be totally yourself with. Take a moment to summon up all the memories you share together, good and bad, highs and lows, peaks and troughs.

Take a moment to imagine you’ve been diagnosed with a health problem. Doesn’t have to be life-threatening, don’t bum yourself out. What would you do? Go online, probably. Google around. Chances are you’ll find a support group somewhere nearby and turn up nervously next Wednesday to find some bad coffee, cheap donuts and common ground with other people going through the same thing as you.

Take a moment to imagine your favourite hobby or pastime. Maybe it’s singing, dancing, performing with other people. Maybe it’s building and racing cars, karts or model planes. Maybe it’s knitting, crafting or baking, especially with friends while you create your new masterpieces. Whatever it is, chances are you like spending time doing it with other people who like spending time doing it.

What if you couldn’t hang out with your best friend? What if a support group was the worst possible thing for you to go to? What if like-minded people were actually dangerous to your health?

That’s the reality for people with cystic fibrosis (CF).

Two people with cystic fibrosis can never meet

Back when I was a kid, I went on two amazing holidays with other people with CF. One was a CF camp in the countryside just outside London, the other a once-in-a-lifetime holiday trip courtesy of a charity called Dreamflight. Both were places where I was encouraged to mix with and seek support from other people with CF.

In the mid-nineties, doctors began exploring a hypothesis that harmful bugs — bugs that may have no effect on “normal” people — could be passed quickly and easily between people with CF, with frequently life-threatening consequences.

It took a while for anyone of my generation to accept something that had been fine last week was suddenly off the table, but scientific evidence began to back up the claims and it’s now clear that cross-infection is one of the biggest risks to people with CF today.

Of course, not all people with CF are alike. There are some people I just don’t like, and a shared life-shortening medical condition won’t do anything to change that. But I’ve gained a huge amount from my friends with CF and it hurts to only be able to conduct those relationships remotely.

Sure, things are far better now than they were in the nineties when I was really struggling. Text messaging (at first) and social media (later) have enabled much quicker and easier communication with friends, and much easier ways of asking questions when you’re not sure if what you’re feeling is “normal” or whether to go and see your doctor.

That doesn’t take away the fact that when you lose a friend to CF, you can’t gather with your surviving friends in a pub to say goodbye. You can’t huddle together at the funeral for fear of putting each other in the same place as the person you’ve come to honour. You can’t give or get a hug when you need it most from the people who understand you most.

Last year when we were thinking up new ideas and propositions for the Cystic Fibrosis Trust, we came up with the concept of “Fighting for a Life Unlimited”. Ultimately, we want to find the cure that means no one with CF ever has to watch their friends die and that parents of people with CF stop outliving their children. We know that along the road to that day there will be many “small wins” that will move us closer to that ultimate goal, each one lifting a limit that CF places on people’s lives.

The limit that means the most to me, that I can’t wait to see, is the day people with CF can meet anyone else with CF without having to take extreme cross-infection precautions. Because not being able to hang out with people really, really sucks.

This post was first published on Medium as part of a five-part series for CF Week 2016