The Loneliness of COPD

Editor's Note: This article was originally published on March 4, 2021.

Going from a very active social life to a stay-at-home life, I can’t help but think this is the start of a lonely existence. I don’t mean loneliness from social contact, although that certainly exists. It is the lack of understanding of our daily struggles with COPD.

Withdrawing over time

It is difficult to grasp the panic that grips a person when they can’t get air. It isn’t the same as a healthy person who just ran up a flight of stairs and got winded. It’s a feeling that really can’t be described unless you experience it. I am accepting of that. After all, do I understand someone with cancer, MS, chronic pain, or one hundred other different illnesses? My husband has chronic pain. I can have compassion and support him on bad days, but I don’t experience what he does.

The lack of social life is another facet of loneliness. I can’t keep up with any walking activities. I will avoid invitations to other people’s homes unless I know they don’t use scented candles or perfumes, or that no smokers live there. Over time, we either withdraw or our friends do. Even though I have always enjoyed a certain amount of solitude, conversations with my dog or husband snoring in the recliner get tiring, and I need more.

Going virtual with COPD

Finding an online COPD support group is a way to socialize and find understanding with others struggling with the same illness. If you find a group you like, and it may take a few, don’t lurk behind the scenes. Engage in conversations. I have made friendships through these groups that have developed into regular phone conversations, FaceTime, and/or Zoom calls. I have also made friends in a few hobby groups and have been part of a virtual book reading club. I also stay connected with out-of-state relatives this way. My grandson “walks” me through his room, showing off his toys, and my granddaughter and I have shared crafts together.

One of the best ways to combat loneliness is to get out of our own heads and volunteer. Even if you are home-bound, there are many volunteer projects available. Here in Massachusetts, there is a friendship program for the elderly that involves phone calls or video chats with those who cannot get out. You can check with your local Council on Aging or senior center to see if one is available in your area.

Volunteer

If you are crafty with yarn, The Magic Yarn Project might be for you. This involves making wigs and hats for young cancer patients. If you can’t crochet, they still have flowers to put together, yarn cutting, or envelopes to decorate.

Operation Gratitude is another favorite. You can write letters to servicemen and women, front-line responders, and the wounded. Just Serve and Volunteer Match have projects listed by area. Not all can be done from home, so you have to search through the various positions. These are just a few of the available websites. A Google search or even Facebook will produce more options.

Effort and communication

I have to work hard not to fall into isolating myself, as I can easily retreat into my own little bubble. I have to remind myself that friendship and family relationships are two-way streets. If I’m feeling a little lonely, I can call them instead of waiting for them to call. If I’m unable to accept an invitation, I can host a luncheon at my home.

The one thing I’ve learned with this disease is that one has to be creative, not just with getting things done throughout the day, but also with relationships. A meaningful quality of life is essential for us all, but it does take effort and communication.

Do you have any tips for avoiding loneliness or isolation? Do you discuss these feelings with your loved ones?

Editor's Note: We are heartbroken to share that Carol passed away in February of 2022. Carol's storytelling and advocacy will be deeply missed, but her legacy lives on through her articles and the many people she inspired.