Liesl Andersson from Kent was told she had idiopathic pulmonary hypertension in November 2014, so PH Week 2019 marks five years since diagnosis. She wants people to be more understanding of those with hidden disabilities.

“In the beginning it was a real emotional rollercoaster. There were lots of dark thoughts, and I was convinced I was going to die. When I got my diagnosis, I asked what my prognosis was, and I was told I had a 50% chance of lasting ten years. It’s weird, because then you hang everything on those ten years, and you don’t think of it as a 50% chance of surviving – just a 50% chance of dying.

At the last appointment I had, because my meds are working so well and my heart has recovered a lot, I asked again what my prognosis was and told  they couldn’t put a number on it anymore. They said there’s no reason why I shouldn’t live as long as the meds are working and they can’t possibly know if and when they might stop.

Liesl and her daughter Billie

I do worry about what the future might hold. I don’t want to suddenly find that everything is going downhill. I know there is a lot more medication I can go on, but it’s still a massive worry. It’s the not knowing that I find difficult, as different medications affect people in different ways and everyone seems to have a different journey.

In many ways I’m really lucky because I’m responding well to the meds and am able to hold down a full-time job as head of sixth form at a special school. But having PH does still affect me and I never know what will change in the future.

I think emotionally, the thing I struggle with the most is that everyone is always telling me how good I look, and how well I’m doing – so it’s really hard to say ‘I actually feel awful today’. I think PH has affected by self-confidence, certainly at work.

The main message I want to get across to the wider public is not to be judgmental. Be understanding, and don’t avoid asking people how they are. However well someone looks, you don’t know how they feel inside.

PH is such a little-known condition, so I just want people to be aware that not everybody is what they seem to be. As with everything in life, empathy is the key.”