As a younger person with COPD I feel like an outsider

Tracy put her breathlessness down to post-baby weight and tiredness. She then found she had COPD and asthma.

Tracy at a singing for lung health event
Tracy at a Singing for lung health event

My last pregnancy was tough. I struggled to get around and often felt out of breath. When this continued after giving birth, I put it down to gaining weight during pregnancy. I was also inactive for longer than most after giving birth as I had a caesarean section.

Not being able to get around and do much left me feeling depressed. I couldn’t understand what was causing me to feel this way. It was a very difficult time.

I was sent for an x-ray and CT scan to get to the root of why I felt so tired. And in early January I was diagnosed with chronic obstructive pulmonary disease (COPD)

The diagnosis was surprising for both me and the doctor - being in my early 40s, it was very uncommon. I was referred to a consultant, who gave me inhaler medications. I had trouble taking them, and at a follow-up appointment even threw up when inhaling one. It was in this appointment I was diagnosed with asthma, as well as my COPD.

I found this difficult to process. How could I have had asthma and not known? I’d always imagined asthma to be feeling wheezy, which wasn’t my experience. This just added to the confusion.

With the help of pulmonary rehab, things started to look better

In June 2017, I attended a pulmonary rehabilitation (PR) class. I learnt about my lung conditions and how to manage them, as well as how to be active in a safe way. It gave me the confidence and hope I’d been missing for so long.

Pulmonary rehab classes gave me the confidence and hope I'd been missing for so long.

Getting to PR was difficult. Two of my children have autism, so keeping things in a routine is essential. My breathing difficulties was already making life as a mum more challenging, so trying to fit in PR classes was a struggle. But I knew it was something I had to do. 

PR made such a difference both physically and mentally. I felt more like me again - I could be more active and I understood my own limitations. Then it stopped and suddenly I was alone again.

While on the PR programme I found myself thinking “I don’t look like the other people here”. And that’s the assumption I think other people make about me. I get on with things simply because I have to, and so it’s hard to understand the pain I’m feeling.

I tried to make my local singing for lung health group, but it clashed with my son’s nursery. The same happened with the National Exercise Referral Scheme (NERS), as the majority of activities didn’t fit in with my routine. It felt like there were services available for people with my condition, just not for someone my age or in my situation.

My depression started to kick in again. I managed to convince a friend to enter a charity walk with me. Having someone to share the journey with kept me going and my mood started to lift again. Getting that medal for crossing the finish line ignited something in me. It was a reminder I could still achieve things, and that I still had my independence.

Crossing the finish line ignited something in me. It was a reminder I could still achieve things, and that I still had my independence.

So far, all my challenges had been horizontal. I decided it was time to aim higher. I signed up for the Midnight Snowdon Trek, feeling ready to take on my biggest challenge yet.

Tracy at a singing for lung health event

I know I can’t climb Kilimanjaro, but Snowdon is just up the road!

Taking on personal challenges is my way of replacing the other services I’ve not been able to access. I feel lucky to have discovered something that works for me. As a younger person with COPD, I do feel like an outsider when speaking to other people with the condition. There’s a group of younger people with COPD who I think are missing out on vital services that should be compatible with a variety of lifestyles.

I think everyone should be able to access PR. It might not be for everyone, but I think the opportunity should be there. And more needs to be done to help people understand the physical and emotional effects of breathlessness and living with a lung condition.

I was lucky to have been diagnosed early and discover something that fits in with my lifestyle. But it would be great to know that there’s more out there to support people like me.


Feeling short of breath from time to time is healthy and normal – but sometimes it can be a sign of something more serious. Take our breath test to see if you should get it checked out.


Comments

I can really relate to Tracys' story. Although I don't have COPD I do have Asthma as well as Bronchiectasis. I am not Tracys age, but I am still under 60. When I first attended Pulmonary Rehabilitation apart from the nurses and Instructor everyone was older than me and it took awhile to adapt to these circumstances. I have been lucky to be offered further exercise clases after I completed PR, but struggle to fit them into my routine because of work.

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17 June 2019