Living better with breathlessness

Researchers Ann and Miriam want everyone to know that it is possible to live well with long-term breathlessness.

People living with breathlessness often tell us it can be very difficult: for themselves, and their family and friends. Even doing everyday things like cleaning and shopping take a lot of effort. Some people need help from others, leaving them frustrated because they can’t do everything they used to. One person told us this:

The emotional side is extremely, extremely important. You don’t get the understanding ... it's easy to get caught up in a downward spiral ending up in a little place all by yourself ...

It can be hard for family members who feel worried and isolated too. This is what a family member told us:

We often feel lonely and on the edge of things.

Breathlessness makes people worried or frightened. At these times, they need support. This is a comment from someone with a lung condition:

I am worried all the time — worried when my breathing will attack me again.

Bringing breathlessness into view

We wanted others to understand what it’s like to live with breathlessness. So, we worked with people who get short of breath and local artists to create an exhibition about how living with breathlessness feels. Opening in Love Your Lungs Week, it's called Bringing breathlessness into view. It’s online, and will tour GP surgeries and community centres across Hull and the East Riding.

It includes images and recordings of people talking about their experiences of breathlessness. There’s also information about how to live better with breathlessness, so that people know there’s something that can be done.

There are ways to live better with breathlessness

We want people to know there are ways to cope with breathlessness. There’s help available from local health care professionals and support groups. We've also created a booklet for the exhibition with practical tips to help manage breathlessness, and details of support in the Hull area. And we've had some positive feedback:

I’ve changed my life. You can’t do the things you used to do, so you’ve got to say ‘‘well, okay, what can I do instead?’’ and get on with it.

Take a look at our online information on breathlessness. There's more practical information on the Cambridge Breathlessness Intervention Service.

Do you have a story to tell? It could be about your lung condition, a friend or relative you know who lives with one, or how caring for them impacts your life. We'd love to hear what you've got to say!

Share your story

Ann Hutchinson and Miriam Johnson

Ann Hutchinson and Miriam Johnson are researchers at the Wolfson Palliative Care Research Centre at the Hull York Medical School.