Living With a COPD Diagnosis
Last updated: March 2023
In our forums, some people share things that they wished they would had known about COPD. One lady shared that she wishes she had known how to cough so she wouldn’t have damaged her throat muscles.
Others have shared some things they wish someone had told them. People new to COPD often don’t know what questions to ask their doctors or nurses.
Better understanding your condition
It makes me wonder if medical personnel can see the needs of their patients. Including how to help their patients understand, respond, and adapt as they enter the COPD world.
My local doctor and pulmonologist weren't quite sure what my diagnosis should be. I had been bouncing between pulmonology, asthma, allergy, and cardiology. They sent me to National Jewish Hospital in Denver, CO.
There were five days of testing and classes, including the proper way to use inhalers. Also, there was a class in respiratory therapy and another in occupational therapy.
Each person had a session with a therapist, and there were classes where we could ask questions. On the final day, each individual had a final review with their personal doctor.
He would change our medications, approve some that he felt were good for each of us, and make suggestions on our overall health, including allergy testing and more! It was very good.
Being there was like being thrown into an arena with a bunch of people; it was full. No one knew anyone unless they had their spouse or someone else with them.
Yet, we found people that had similarities to us. It was so nice to know that we weren’t alone.
Some classes were for the person with COPD, while others, such as family members, might have their own classes. We would meet for lunch and sometimes during breaks.
Feeling alone with COPD
It was nice to know that we weren’t totally alone and that we had someone to discuss the classes with. Even the way that others were responding to COPD diagnosis.
I wish that I could have remembered everything and brought it all back with me. Then others could know and understand as well. Notes just weren't the same.
Really, I think I did bring it back with me. The part of being alone. Eventually, I started a site for COPD friends. So many others felt like I did.
Alone, misunderstood, and for some, even distrusting. You see, they might share their COPD, and sadly, the person they were talking to possibly wasn’t very receptive.
Those who I saw, like my family, seemed afraid. One or two of my adult children even questioned if death was imminent, especially if I tried to give them a piece of jewelry or more.
Being there for each other
Most people that know me don’t believe I lack confidence. Some think I’m like a bull in a china shop.
I see what I want and go after it. That’s true during different parts of my life, especially when I worked in the ambulance.
That can feel like it was a year ago or a lifetime ago. That was in 2007.
Now, when taking the time to review what I think or say as I go makes quite a difference, in front of medical professionals, family, or more, the confidence isn’t quite there.
I stammer and stutter too often. Now with dentures, it's worse. I don't think that I speak clearly enough.
I'm much more comfortable typing or messaging. However, I was part of a question-and-answer tape a few years back. It was fun, and I did do well.
If you wonder why I’m telling you all this, it’s because we are here for each other in many facets of our lives. We should be here for each other when we cope with a chronic illness, even COPD.
Maybe you will have someone reach out to you—someone who has a new COPD diagnosis or something else.
It's important that you respond to them or have someone else do so. I'm happy to do so.
There will come a time when you might help to educate someone on COPD or even to tell your story. That can help you and them. Even responding to others' posts can be so helpful to them, and also to you.
Find your comfort zone. We learn from each other. Educating ourselves helps us as well as others.
I hope that you have a breathe-easy night and day. Always know that we are here for you.
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