It seems like a long time ago, but near the end of 2019, I conducted an informal survey on COPD360social as well as some Facebook COPD support pages. There was really only one question on this “survey”, but it was one that I thought was important to ask. I simply posed the question, “What do you wish you had known when you were first diagnosed with COPD?” Within a few hours of posting that question, I had dozens of responses. By the evening there were about 150.
Of those responses, there were several recurring themes. I decided to condense the answers down into similar statements or categories. The image you see here represents the most common answers to that question. Some of these were questions that people had about taking medicines or adjusting their lifestyle, while others would want to know how COPD may affect other illnesses or that what/when you eat can be important to managing COPD.
Many people responded with statements that said they were in denial early on or didn’t really understand what COPD even stood for. There were also people who made comments about being afraid or completely lacking knowledge about living with COPD. We hear that from our new members all the time, don’t we?
In the time since receiving these insights, I have shared this image with many health care professionals, and do you know what their responses have been? They were so blown away by these answers! Many of them said they had sometimes forgotten to consider how overwhelmed people can be, how you might not understand what the diagnosis means, or even that you might need instruction on using your inhalers correctly. If this tells me anything, it is that more communication needs to happen between patients and their health care teams. Tools like the My COPD Action Plan or the Pocket Consultant Guide (PCG) app can help improve that communication. If you want to learn more about those tools click here: My COPD Action Plan or PCG APP
In keeping with our topic this month, which is For the Newly Diagnosed, I am going to ask you to answer the question I asked all those months ago: What do you wish you had known when you were first diagnosed with COPD? What would you say to someone new to us and just learning about living with COPD? Post your answers here – you never know how it might help someone else.