Patient Voices #BreathlessNotVoiceless

Pam Ellis

PH is frustrating, debilitating and scary”

Pam Ellis is 62 years old and was first diagnosed with pulmonary hypertension (PH) about three years ago.

“I can’t walk to the shops because it’s too far and I get out of breath. I have real difficulty doing stairs and I can just get breathless trying to get dressed. Some mornings just stood in the shower, I’m breathless and I’m not even doing anything.

Day-to-day it’s more about completing tasks that others would think nothing of doing. Like making a cup of tea, or washing the pots, or going around the house with the vacuum cleaner. These are all things that take me more time and sometimes I physically can’t do it.

Having PH affects me mentally and emotionally all the time. Mentally I’ve lost so much confidence. I used to find it easy to go and speak to people, I was comfortable standing in front of an audience, I’d go to places I hadn’t been to before and felt comfortable to introduce myself and chat to people. Most of that has gone now.

The hardest thing about living with PH for me is the frustration of not being able to do what I feel I should be able to do at this age.

PH is an invisible illness because you don’t visibly see that anything is wrong. When I say I’ve got pulmonary hypertension people say, ‘oh it’s high blood pressure’. I respond by saying, ‘no actually it’s not high blood pressure, I know hypertension is usually associated with that, but this is different.’

If I had to sum up PH in three words it would be frustrating, debilitating and scary. You just don’t know when it’s going to happen.”