Why COPD Loneliness Shouldn't Be Ignored
Getting a COPD diagnosis and learning to live with the realities of a lung condition can leave you feeling isolated. Understanding these emotions and adjusting your life can be a huge hurdle for many people, possibly even more so than the physical symptoms that come with COPD.
It is estimated that more than 30 million people are living with COPD in the USA. With such a big percentage of the population affected by the condition, we’ve taken a look at why many people with the condition find themselves feeling so alone.
Recent research from the social network HealthUnlocked found that before joining their platform, 60 percent of people had never met someone with the same chronic health condition as themselves.
Commonly people rely on support from their doctors, whose focus is usually addressing the physical symptoms of COPD, and then turn to friends or family to deal with issues such as social isolation and loneliness. However, it’s very unlikely that the people they are turning to, know anything at all about what it’s like to live with this chronic lung disease.
Searching for COPD Support
People are therefore increasingly looking for support in other places, with peer support in the form of COPD online forums rapidly growing in popularity.
Building on the traditional group support that has existed in buildings and community centres for years, these communities operate on a much larger scale, bringing thousands of people from across the globe together to discuss everything from symptoms and side effects of prescribed drugs, to the feelings that come with COPD and even dealing with family and friends.
We’re beginning to see evidence that these communities are starting to bridge the gap between discussions with your doctor, and the need for emotional support and further information after a COPD diagnosis.
A quick look through the NewLifeOutlook's COPD community on Facebook finds these highly relevant comments:
- "I wasn't any good...to anyone my family really didn't understand ... they thought it was a joke I had just lost my granddaughter two months before. I still can not explain [or] express [that] I just want to live. I take one day at a time." – Teresa G.
- "You know what hurts me? People don’t understand why I stay at home and don’t do much. I have COPD and I have congestive heart failure, walls in my heart had became hardened and it cant expand to pump oxygen and fluids, this adds to the COPD because my heart can't function pumping oxygen. It really bothers me that people I love think I am just lazy or gave up, I have worked my whole life and loved it but now I’m lucky to walk to my car without having trouble, oxygen 24/7 this ain't no kind of life, I guess that's all I can say about COPD." – Ellen M.
- "I'm [in] stage 4 GOLD now have been for the last five years. Yes, it is difficult to live with COPD and yes, people don't understand, but you know, don't worry about them and don't let them upset you. It's not worth it... I take one day at a time and thank God every morning for opening my eyes to a new day. Wishing you all a good breathing day and year. God bless you all." – Noeline DRC.
- "I feel so sorry for anyone who has to live alone with a disabling disease it's so hard for me at times, I don't know how I would be able to do these things without help." – Richard D.
- "I've always stayed positive about my COPD, but families and friends don't want me around [because] it's a hindrance and a bother. So I just do nothing now. I know it's bad, [but] it's my choice too, why make them try to understand." – James Karl Zanetti
- "I have COPD, asthma [and] among a few other ailments. I get told all the time there is nothing wrong with me. Some people have no consideration for others [and] they don't care if [they are] spraying air freshener or smoking that cigarette [which] affects your breathing. It's not them gasping for air, so they just don't care." – Freda Miller-Hanneman
- "I have it said to me daily that I don't look ill. I do not waste my precious breath explaining my symptoms. If the people that genuinely care and understand that's all that matters." – Eunice Mc
These comments show exactly how people with COPD feel, and the responses posted in reply to them, from peers with COPD, demonstrate why this support is changing lives. They are positive and uplifting, and even more importantly, show some real-world understanding of what the person is going through.
COPD can be a life-changing diagnosis for anyone, but opening up access to support like this has the potential to revolutionize peoples experiences of living with it, simply by bringing people with the health condition together.
These are exciting times, and we expect to see more and more support being offered this way to people with COPD and more people actively seeking it out as part of their own COPD treatment and management of the condition.