Patient Voices #BreathlessNotVoiceless

Paula Hartley

“Until you’ve walked in the footsteps of someone with PH, you’re never going to know what it’s fully like”

Paula Hartley has lived with PH for 12 years. This is her story.

“PH has affected me emotionally in a lot of ways. I was quite a strong person, and I still sometimes see myself as a strong person, but it did get really bad to the point where I started thinking about harming myself. That’s when I got counselling, which helped tremendously.

You feel a burden to your family and to yourself. I get frustrated with myself because I can’t do the things that I want to do, and it all just gets on top of me. Sometimes I think, why bother? Why bother putting everyone through this? I can see it affecting other people’s lives, not just mine.

PH has had a massive effect on my social life. My husband and I used to run pubs and were always going out, but now we hardly do anything.

I feel very differently about myself since I’ve been diagnosed. I feel that I am not the full person I was before because I would do anything and go anywhere, but I feel that has been taken away from me now.

I feel very lonely. Although people might know what the illness is, I don’t think many know how it makes you feel. Until you’ve walked in the footsteps of someone with PH, you’re never going to know what it’s fully like.

My one-year-old granddaughter has really helped my mental health. It’s an unconditional love. She obviously doesn’t know anything about my condition, she just wants her Nanan, which is wonderful. My family is so important.”

Ian Hartley, Paula’s husband

“It’s been really hard. Before Paula had PH we used to go out all the time; now our social life has really changed. It really gets her down sometimes and she normally cries when she talks about PH.

Sometimes I have to make her come out with me. I get upset, and then she gets upset. But what can I do? I can’t do much, can I?”