I retired last year due to COPD-related illness. 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, when my symptoms increase.
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. I wanted to feel like things were back to normal in spite of my chronic condition.
My friend’s total ignorance of my condition and subsequent approach baffled me.
She didn’t mention my new oxygen cannula face gear or my supplemental oxygen tank. It’s odd because all of my conversations lately 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 lots of tips and tricks to help me lose weight and get back 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 a discussion with someone who may mean well but is quite simply misinformed about my chronic health condition. But next time, I’ll be prepared.
Here are my tips to handle unwanted advice about COPD.
Be prepared to explain what COPD is and isn’t
Many people who don’t have COPD simply don’t understand the condition. They might compare your chronic, incurable illness with a flu virus. They may think that using supplemental oxygen makes your breathing normal. 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 to be uninformed when we met.
Have an elevator pitch ready
You might need a plan B if a friend seems to misunderstand your condition despite your 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 to allow fresh air containing oxygen in. Someone with COPD becomes very short of breath during any kind of exertion.
COPD is often caused by smoking. But there can be other causes. Medications help. 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 realise that what they say can hurt you. It helps to prepare a few responses to common comments:
“You brought on your illness.”
I realise why I have COPD. I wish had never started smoking and was better able to 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. Piling on the guilt now is way too late and won’t make any difference to you or to me.
“You’re lucky you can’t work.”
I can’t work because constantly gasping for air takes up all of my energy. I had none left once I got to the office, and that was interfering with my work. I was forced to leave my job with no pension, no severance, and no financial support. Given a choice, I would give my right arm to be able to work again.
“You look so good.”
Saying that minimises my illness. I know that I’ve aged after what I’ve been through. I would rather that you just ask how I am and how the changes in my life affect me.
“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 quite 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 you must start over again and try a little harder than yesterday.
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 being mindful of the current moment only. I’ve learned to centre 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 simply don’t know how to listen.
Don’t take it personally. It’s a problem for your friend to work through and has very 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 just isn’t getting 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, her hobbies, and her holidays. Be a good friend and be truly interested in what she says.
Set your boundaries and stick to them
Never let anyone tell you what you need or get yourself into a situation where your needs are not being met. Set boundaries about what you’re willing to accept from a friendship. If someone cannot accept those boundaries, it’s time to end that relationship as it exists.
I realised that socialising with able-bodied people was going to be challenging. I know that my needs 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.
UK/MED/20/0149 May 2020