Advice from Sophie Papageorsis, a psychotherapist who has lived alongside pulmonary hypertension for 20 years.

Being diagnosed with PH doesn’t just impact the individual  –  it’s fair to say it ripples out to those around us too. Whether it’s family, friends, healthcare professionals, co-workers, or even passers-by, there can be a variety of different responses. While much of it comes from a place of care, managing those reactions can feel like an additional weight you didn’t ask to carry.

People’s responses can be confusing, they may change over time, and sometimes they might even contradict each other. One minute you might feel smothered from concern and worry, and the next misunderstood or dismissed. You may find loved ones checking in, panicking about your symptoms, or sharing alarming things from Dr Google. While it’s comforting to know people care, this level of concern can feel overwhelming. Added to feelings of being a burden,  it can be quite exhausting having to reassure others (particularly when internally you might be panicking from Google!)

At the other end of the scale, you might find those who don’t seem worried enough. You might hear “You don’t look ill,” or find people expecting you to keep the same pace as them. Because PH is often invisible, others may forget your limitations or compare it to conditions they understand better. While it can be nice not to have PH constantly as the focus of interactions with others, this can leave you feeling invalidated, lonely, or doubting your own symptoms.

“While we can’t control how others react, it’s so important that we focus on what we can control and protect our own wellbeing.”

Medical professionals often present similar challenges. Although our specialist centres have a great understanding, outside of there, medical staff can be unfamiliar with PH. They may confuse it with general high blood pressure or assume that you look well so you must be alright. When I was a teenager, any mention of breathing difficulties was put down to panic attacks, and I remember how much this made me question my sanity, chipping away at my mental health.  

On the other hand, medics may panic when they see low oxygen levels without understanding that we have a different baseline. Both responses can be equally exhausting, leading to repeated explanations and the constant need to advocate for yourself. And then on yet another hand (we don’t have three hands!), sometimes medics will understand, which can end up with them putting everything down to PH, overlooking other symptoms. It can be a tricky balance for sure!

Also, a brief mention needs to go to the passersby. The ones who might notice that you’re a bit breathless and kindly check in with you (which personally causes me a mass amount of panic and “Why?! What’s wrong with me?!”); the ones who may give you side-eye for waiting for a lift up one floor instead of taking the stairs; and the ones who might challenge you for using a disabled bay even though your badge is nicely on show. These can be reminders that not every struggle is visible, and when it is, we might not want to be asked about it -even when it comes from a place of good intentions.

While we can’t control how others react, it’s so important that we focus on what we can control and protect our own wellbeing. Although it can feel like an extra thing to navigate, trying to have open conversations about what is and isn’t helpful with those around us, can help us manage their reactions.

Setting boundaries, being honest about our physical limitations, and stepping back from overwhelming conversations isn’t selfish – it’s necessary self-care. If someone we loved had PH, or a similar condition, I bet we would want to support them in the way that works best for them. That means communicating openly, trying to understand life through their experiences, and listening to what actually helps. While these conversations can feel uncomfortable at first, in the long run they often make things easier for everyone involved.

“Setting boundaries, being honest about our physical limitations, and stepping back from overwhelming conversations isn’t selfish – it’s necessary self-care.”

Connecting with others who truly understand, through peer support, patient groups, or organisations like the PHA UK, can help ease isolation and be a good reminder that you don’t have to carry this alone.

Living with PH can be hard enough without holding everyone else’s reactions and emotions too, and the more open we become around potentially difficult conversations, the more comfortable it will begin to feel.