Earlier this week, Ciara shared this video explaining cystic fibrosis in which she not only covers what CF is, but also the effects it has on people.

From the lungs (which most people know about), to the pancreas and stomach (which some people know about), all the way through to CF-related diabetes, osteoporosis (brittle bones) and more (which most people don’t know about).

She also touched on a really important point that affects most people with CF (in my experience at least):

CF is not just physical

It’s tough growing up knowing you’re likely to die much younger than your friends. It’s tough to be forced into making decisions based on health not desires when all your friends are off for a night out. And it’s tough not knowing if you’re ever going to be able to study or work full-time, or if you’ll always be too ill.

When you look at your friends in the prime of their lives, seemingly free to do and enjoy whatever they choose, whenever they choose, having CF starts to grate a bit. Your friends fly off to the far reaches of the world for the most remarkable gap years while you know that a developing country doesn’t offer the emergency healthcare you might need.

By far the hardest part of a life lived with CF, though, is watching the condition slowly whittle down your circle of friends. I’ve lost more friends that I care to count to the same condition that I know will one day kill me, and that’s a brutal reality to live with.

The challenges only multiply when you’re listed for transplant: you know you’re only on the list because the docs don’t expect you to live much longer, yet you’re so weak and so frequently ill that you can’t do all those bucket-list things you want to do before you do pop your under-used clogs.

Add to that the fact that you know waiting for a pair of lungs means you’re waiting for someone else to die and you’ve got a whole mess of different emotions and expectations to deal with.

Strength is all relative

Ciara put her finger right on the button in her video when she says this is all made harder by how often people tell you how strong you are.

“People are always telling me how inspired they are by my strength.” Ciara Hillyer

I’ve never begrudged inspiration — who am I to tell people what they should and shouldn’t be inspired by ?— but for a lot of people this perception of strength can enhance a greater weakness: a refusal to seek help. As if asking for help negates people’s admiration because you’re not doing it on your own.

I have a secret: that’s bullsh*t.

Brian Shaw is the world’s strongest man. Do you think he does it by sitting on his sofa all day? No, he trains. He worked hard to get to this point he’s working hard to stay there. And he doesn’t do it on his own, either. He has a team of trainers, advisors, supporters who are with him every step of the way.

It’s not weak to seek help, it’s a sign of ultimate self-knowledge and strength. When we can stand up and recognise our biggest challenges, we’re already winning the battle against them.

There is no simple solution

Even after transplant the issues don’t go away. Survivor’s Guilt is common, questioning why I’m still here when so many of my friends aren’t.

The first Christmas after my transplant we were all overwhelmed by joy, but I was also crushed by the devastation that one family was feeling somewhere in the world.

But the last nine years have taught me something vital in my fight against my mental health battles — a lesson I learned from an amazing friend of mine, also a transplant recipient, and no longer with us:

“This is my life and I choose to love it.” Emily Thackray

I’m here, I’m alive, I’m breathing. I’m working, I’m playing, I’m learning. I’m married to an incredible woman and I’m surrounded by incredible family and friends. Why I’m still here doesn’t matter.

Maybe I was chosen, maybe I’m just lucky. Maybe there’s a reason for this, maybe there’s no reason to anything. Who are any of us to judge our places in the world?

My choice is to live my life in the best way I know how and to hope that someone, somewhere is looking down on me and thinking, “I’m glad it was him.”

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