Painting a Picture of Life With COPD

Illustration 1: Lungs

It can feel like you’re always carrying COPD with you.

But it doesn’t need to weigh you down.

People told us that COPD is something that’s difficult to forget: “It’s there wherever you go”. Some felt separate from the condition: “It’s there but don’t make it yours”, with one describing it as the “beast inside”.

The lifestyle changes people have to make can also be a constant reminder of the condition. It was generally agreed that a good day with COPD was one in which you could put it to the back of your mind and go about normal life.

Illustration 2: Lightbulb

On the good days, you feel brighter and lighter.

Find out how others make the most of the good days and manage the bad ones.

Most people told us they do have good days despite COPD. Even if they couldn’t forget about the condition completely, on a good day people felt able to ‘get on with life’. “It’s like clean air, free, a clear sky … you can breathe it in deeper”.

The consensus was that the goal was often just to live as close to a normal life as possible, so “I do everything everyone else does”. Many wanted to lead healthier lifestyles to help them manage the more difficult times, which they explained as a weight or a darkness: “… like a cloud hanging over you, a big heavy cloud”.

Illustration 3: Isolation

COPD can make you feel vulnerable, or even isolated at times.

But the people around you can be a big help.

Discussing COPD with friends, family and colleagues was something people felt reluctant to do, either downplaying or hiding the condition. Unlike asthma, COPD was something many hadn’t heard of before, which made it more difficult to explain: “People have heard of asthma but not COPD”.

There was a sense of anxiety about going out: “It’s the potential of being vulnerable in public”. Visible symptoms such as coughing and breathlessness, along with the need to use medication in front of others, made people feel self-conscious. People told us the support and understanding of others could be invaluable in helping with these feelings.

Illustration 4: Storm

At times COPD can feel like a storm raging around you.

But it doesn’t need to wash away all the positive things in life.

The symptoms of COPD are a constant reminder of the condition for many. People often felt overwhelmed by symptoms: “They’re like these huge waves you can’t escape to get that breath”.

But all agreed they wanted to enjoy their lives despite the condition: “I don’t like it to take over my life”.

Their approaches ranged from taking up gentle exercise classes – such as Pilates – to walking more slowly, making dietary changes, or learning relaxation techniques and breathing exercises.

Illustration 5: Balance

It isn’t always easy balancing COPD on one side and normal life on the other.

The right help can help you stay steady.

Many people said they plan their days in advance to ensure their symptoms don’t get worse: “You just have to think a little bit more”.

“You also have to be aware of the environments that you are in, that you are not surrounded by too much pollution – you need to be out in nature and get good quality air.”

There was a sense that living normal life with COPD was a balancing act, in which ‘getting on with normal life’ is on one side and the allowances they make to accommodate COPD on the other.