Upon hearing that a friend or loved one has a respiratory illness such as chronic obstructive pulmonary disease (COPD), some people can be misinformed and careless with their words. Here's how Barbara Moore stood up for herself.
I retired last year due to COPD. Cabin fever set in recently, and I wanted to see if I could be social again.
I decided to meet an old friend. We’d worked together for over 15 years. I suggested lunch so I’d be home before dark. My symptoms tend to worsen overnight.
These days I don’t get out much. I use supplemental oxygen on a 24/7 basis. This lunch was going to be the highlight of my month. I just wanted to catch up on news and office gossip. Despite my chronic condition, I wanted to feel like things were back to the old days.
My friend’s total ignorance of my condition and subsequent approach baffled me.
She didn’t mention my new oxygen cannula face gear or supplemental oxygen tank. It’s odd because all my recent conversations have revolved around my new diagnosis.
I was slightly lost for words, so I let her take the lead.
My friend told me that she considered me overweight. She said, in her opinion, this was the root cause of my recent health problems. She offered tips and tricks to help me lose weight and return to “normal.”
Needless to say, this advice wasn’t helpful. I have a team of trusted medical professionals who understand and treat my condition — those are the opinions that count.
This probably won’t be the last time I’m faced with someone who may mean well but is misinformed about my chronic health condition. But next time, I’ll be prepared.
Here are my tips for handling unwanted advice about COPD.
Be prepared to explain what COPD is and isn’t
Many people who don’t have COPD may not understand the condition. They might compare your chronic, incurable illness with a flu virus. They may think using supplemental oxygen makes breathing as easy as it once was.
Short of a medical miracle, nothing I do will make my breathing normal again.
I wanted to help my friend understand my condition. I emailed her articles and videos about COPD to help inform her before we met. That tactic might help some people, but my former colleague still seemed uninformed when we met.
Have an elevator pitch ready
You might need a plan B if a friend seems determined to misunderstand your condition despite efforts to inform them in advance. I’m always prepared to explain COPD.
I tell people that chronic obstructive pulmonary disease is a lung condition that makes breathing very hard. Damaged lungs can’t expel carbon dioxide very well, which doesn’t allow deep inhalations of oxygen-rich air. Someone with COPD can become very short of breath during any exertion.
COPD is often caused by smoking, but there can be other causes. Medications may help slow the condition’s progress, but COPD is a lifelong and incurable disease of the lungs.
Share how their words can hurt you
Sometimes people are careless with their words. They may not realize that what they say can hurt you. It helps to prepare a few responses to common comments:
1. “You brought on your illness.”
I realize why I have COPD. I wish I had never started smoking and could better fight the addiction. But cigarettes were designed to do just what they did to me.
Many people have fallen for the same trick. Not all people who smoke get COPD. Only about 20 to 30 percent of us do.
I know all too well what my future looks like. It’s too late to pile on the guilt – and it won’t make a difference to you or me.
2. “You’re lucky you can’t work.”
I can’t work because constantly gasping for air takes up all my energy. I had none left once I got to the office, which interfered with my work. I was forced to quit my job without a pension, severance, or financial support. Given a choice, I would give my right arm to be able to work again.
3. “You look so good.”
Saying that minimizes my illness. I know that I’ve aged after what I’ve been through. I’d prefer you to ask how I’m doing and how much the changes affect me.
4. “You just need to lose weight.”
My condition is caused by an inability to breathe. Losing weight is very hard with the medications I take to keep my lungs working as well as they are.
I follow a regular exercise regimen every day for that purpose. I’m proud of the changes I’ve made so far.
Keep a positive mindset
It can be hard to stay positive when you have COPD. Every day is a new, harder challenge.
It doesn’t help when someone questions you or your disease. Never allow negative self-talk. And never listen to negative opinions.
I stay positive in these situations by staying in the moment. I’ve learned to center myself, picture a positive situation, and breathe deeply.
Don’t argue with someone who’s stubbornly uninformed
It’s frustrating to talk to someone who doesn’t understand your condition and isn’t willing to hear your side of the story. Some people don’t know how to listen.
Don’t take it personally. It’s a problem for your friend to work through and has little to do with you. Sometimes arguing doesn’t get you anywhere. It’s better to let it go.
Divert the conversation
If a conversation isn’t going anywhere, it helps to switch the topic away from yourself. Begin a conversation that revolves around your friend and her life.
For example, ask about your friend’s grandchildren, hobbies, or holidays. Be a good friend and be genuinely interested in what she says.
Set your boundaries and stick to them
Never let anyone tell you what you need or allow your needs to go unmet. Set boundaries about what you’re willing to accept from a friendship. If someone purposely crosses those boundaries, it’s time to end that relationship as it exists.
I realized that socializing with able-bodied people was going to be challenging. I know that my needs have changed, not theirs. I don’t take it personally.
I’m thankful that the friendship with my colleague served its purpose. I also know it’s time to move on. I’ve given myself permission to do so without anger.
The information presented is solely for educational purposes, not as specific advice for the evaluation, management, or treatment of any condition.
NPS-ALL-NP-00856 FEBRUARY 2023