A part-time… superhero?

I realised now that since I’ve started working at the Charity never once have I written a post about it. Well, it’s about time. After all it’s a big chunk of my week, and my life, so it seems only fitted that I tell you about it. Here we go.

September 1st 2015 I joined the Cystic Fibrosis Trust as a part-time Internal Comms Officer. I don’t like the word Officer, it’s like I’m in the army or something, and totally unfitted to the atmosphere of the Trust (I think), so let’s say I am an Internal Comms person. In a way similar to what I was doing before, mostly because the job title is the same (but in reality it’s completely different).

Here’s a bit about the Trust and CF

The Cystic Fibrosis Trust is the “only UK-wide charity making a daily difference to the lives of people with cystic fibrosis, and those who care for them”. We “dedicate ourselves to promoting excellence in research and clinical care, as well as providing practical support and advice to people with cystic fibrosis and their families.” Yes, this is all taken from the website; I thought it put it much better than I would.

What is CF? Here’s the definition (also from our website) “Cystic fibrosis is an inherited disease caused by a faulty gene. This gene controls the movement of salt and water in and out of your cells, so the lungs and digestive system become clogged with mucus, making it hard to breathe and digest food.”

In my own words…
Since I joined I have been learning a few things: CF is basically a really tricky one, as it can be different from person to person; from my (short) knowledge everyone living with CF has a different experience. Everyone lives it differently. As one of my colleagues’ at the Trust said when she was explaining CF to us ‘you may leave this room today thinking you know all about CF, but the fact is you’ll only know about my CF’.

It can be quite ‘invisible’, but just because we don’t see it doesn’t mean it’s not there. People can be quite rude too – make assumptions, like for instance assume that person is coughing and spreading a flu all over the train, and actually make rude comments, when in fact that’s not the case. So don’t make assumptions. People with CF can cough a lot, or not, depending on each individual.

Due to the faulty gene people with CF are also more apt to get infections (‘bugs’), as they can’t really fight it off as well as we do. So we have to be very careful, if we have a cold we can’t go to the office.

Their lung capacity can suddenly drop and in most serious cases people end up on the transplant list. One in three people with CF will die on the transplant list.

Nowadays more than half of the CF population in the UK will live past 41, and a baby born today is expected to live even longer. But it wasn’t like that before. Many of my colleagues with CF say that when they were born, their parents were told they wouldn’t live long. Depending when they were born it could be ‘your baby won’t live past 5’, ‘won’t live past 12’, ‘won’t live past 20’… And even though it’s great that it’s improving, living with CF can still limit people in some respects (again, these can all be very different from person to person).

I know that most people with CF have to do a lot of physio – two times a day or more, which takes a lot of time, and they can never have a day off; they have to take loads of medication; and travelling is tricky because of insurance; they have to be super mindful about a bunch of germs and bacteria that you wouldn’t usually think about. And there’s also cross-infection, which means that people with CF should not meet face to face as they may pass different bugs on to each other.

As I mentioned before some of my colleagues have CF, so this means only one at the time can go to the office, which can be really annoying. As hard as it is to believe, sometimes people really do want to go into the office, and it sucks that they can’t just ‘show up’. We still have ways: email, Skype, yammer… it’s not the same, true, but it help us still feeling like a team.

My work

I guess that’s where I come in, my job is as I said internal communications. I am not involved in external campaigns, fundraising, and other things that actually bring money to the Trust and help us fight for a life unlimited for those with CF. But for the first time I really feel like my job is relevant, and like I am helping as well. I feel as much as a contributor to the cause as everyone who raises funds.

My job is to tell people what’s going on, is to help them feel closer together, to help them work as one. My job is to bring the good news, to tell them what we are doing, to ask them for help and ideas. To make them feel as engaged as I possibly can (although I have to say, I don’t think I’ve met a disengaged person yet).

It’s only been a few months, but it’s going really well so far. I really feel good going to work and leaving work, even when I work late. I never feel like I am doing pointless work, even if and when someone tells me they don’t read the newsletter. I love writing that newsletter. I also love doing everything else and can’t wait to start more projects.

At my previous job I liked so many people and many people liked me; someone actually wrote ‘you are like the sunshine’ on my leaving card (ah so sweet); however I could never put my bubbliness to use into my actual job, because it just wasn’t a match. And now I can. I can finally use my sunshiness at my actual job, and that’s priceless.

More importantly I believe in our work, and that feeling of pride is like fireworks. Or better yet, it’s like chocolate. Chocolate and fireworks.

Once I was in a meeting with one of my colleagues who has CF (I guess she’s a friend now) and we started talking nonsense and how we both felt that working for charity felt like being a superhero. It so does! (We are totally making a song BTW).

I have only met a few people with CF so far but already I am wishing the world for them… I am dreaming of the day when everyone in our team can go out for drinks together, even if we have to wear space suits.

I am so proud to be helping the Trust fighting for a life unlimited!


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