Support groups changed my perspective on using portable oxygen
I used to see my concentrator as a burden. Now, I view it as a helpful tool.
Written by |
As my regular readers may remember, I am prescribed supplemental oxygen therapy. Pulmonary fibrosis makes it difficult to catch my breath during exertion. Long-distance walking has become difficult, going to the gym can be a challenge, and there are even days when it is simply hard to breathe.
When my pulmonologist and I decided in 2019 that I would start oxygen therapy, I thought, “No problem. I got this.” How hard could it be? I attach the cannula to the concentrator or tank, place it in my nostrils, and breathe.
Simple.
But after several trips out in public carrying my portable oxygen concentrator (POC), it began to feel like a burden. I was embarrassed to carry it and saw it as a sign of weakness.
I wasn’t happy about carrying my POC everywhere. I was constantly bumping into things or people and apologizing. Eventually, it became such a burden that I stopped taking it with me on short trips. If I had difficulty breathing, I would simply sit down, regain my breath, and move on.
I also worried about something I’d heard: that I could become “addicted” to supplemental oxygen. (I now know that this is a myth.) I wondered if, at some point, my body would become dependent on it even if I didn’t really need it.
However, I didn’t realize that by leaving my POC behind because I was embarrassed to carry it, I was putting unnecessary stress on my body. I had been so focused on the inconvenience of carrying oxygen that I hadn’t stopped to think about what it meant for my quality of life.
A change in perspective
Then I found Right2Breathe, a nonprofit organization based in Flemington, New Jersey, founded by Joe Morrison and Tim Charlet. I had been looking for a group that could further educate me, raise awareness of respiratory diseases, offer resources, and, most importantly, provide a space where I felt accepted.
I signed up for their online patient group, Pulmonary Chat. Soon after, I received a Zoom link to attend my first meeting. Coincidentally, the name of the meeting was “The Importance of Mobility, Long-Term Oxygen Therapy and Portable Concentrators.”
At first, I didn’t think I would find a discussion about oxygen therapy particularly interesting. What more could I possibly learn?
As it turned out, quite a lot.
The presenter discussed the importance of using oxygen as prescribed and how maintaining adequate oxygen levels can affect our quality of life and ability to stay active. There were medical terms and charts that I had never been taught before, but one message stayed with me: I needed to stop thinking of my oxygen as a burden and start seeing it as a tool that helps me live.
I am guilty of thinking that when I am resting, I don’t need my oxygen. If I am relaxing and watching a movie or listening to music, I sometimes think, “My body and lungs are at rest. There is no exertion.”
But I began to understand that my need for oxygen doesn’t disappear because I am sitting still. When I get up and move, I feel how quickly my breathing changes.
That made me rethink my relationship with my POC. To make things easier, I decided to give the device a name: Cooper.
Somehow, giving him a name changed the way I looked at him. I no longer see Cooper as a burden, but as a tool that helps me breathe and maintain my quality of life.
For years, supplemental oxygen reminded me of my illness. Now, I am beginning to see it as something that helps me live.
My experience with Right2Breathe reminded me that there is always more to learn, even about the things we have lived with for years. As patients, we can learn so much from one another when we have a place where we feel comfortable asking questions and sharing our experiences.
If you live with pulmonary fibrosis or another condition requiring supplemental oxygen, you don’t have to navigate it alone. Sometimes, finding the right support group can give us information we didn’t know we needed, and perhaps even change the way we see the things that have become part of our everyday lives.
Cooper is part of my life, and I parade him around proudly.
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.
Leave a comment
Fill in the required fields to post. Your email address will not be published.