-
What questions about IPF frustrate you?
I learned early on that I needed to change the way I introduced people to my IPF diagnosis. Shortly after diagnosis, I would tell people that I was diagnosed with idiopathic pulmonary fibrosis. This seemed to prompt the question “How did you get it?” I found that frustrating, but soon decided I needed to introduce it differently. I changed my intro to I was diagnosed with idiopathic, meaning the cause is not known, pulmonary fibrosis. It did not always stop someone from asking how I got it, but it reduced the number of times I was asked.
Have you had to answer this question, or have you had questions about your diagnosis that are frustrating?
-
6 Replies
-
I guess the question of how I got it doesn’t annoy me as I just say, “pulmonary fibrosis”. I usually have to say, “my lungs are getting stiff, and they don’t know why” based upon the look on most people’s faces because pulmonary fibrosis is not something they hear every day. Most people seem to assume I have COPD when they see me with oxygen. I will correct them if they ask if I have COPD, but frankly, it really doesn’t come up much.
-
People go with something they are aware, like COPD for example. It is the reason I work hard to raise awareness of IPF.
Sam…
-
-
I always get: “Do you have an inhaler”? Or “What can be done”? Or “Can you have a lung transplant”? (Like thats easy…right?) “How did you get it? Stepping away and then saying “is it catching”?
All above I’m sure you have heard before and others i’m sure.
What I would like to hear is this:
I HAVE BEEN WORKING ON SOME RESEARCH AND I HAVE FOUND A CURE. DO YOU WANT THE DRUG THAT CAN REVERSE YOUR LUNG FIBROSIS?
Of course I have never heard that, and probably wont before I leave this mortal coil.
I wish somebody somewhere can find a cure for this sooner rather than later.
Keep smiling, keep the faith, keep hoping…..
Jeff in England.
-
You and me both mate. I can tell that there are a lot of very smart people working on better understanding this disease and searching for a cure.
Sam…
-
-
What frustrates me is when I’m out in public and get nasty comments and looks when I’m coughing. Perfect example was when I had my husband at Wound Care Center for treatment. I started coughing and a couple told me I had no right to come into a waiting room spreading germs! I was so embarrassed I excused myself, left my handicapped husband with his aide and went outside. People make comments, stare and often give advice on treatment and cures for PF. Why don’t they just ask us how we are?
-
Hi Pixel,
Prior to receiving my transplant, my cough was ever-present and very noticeable. The cough is the most visible external sign of IPF. My cough was on full display when COVID-19 was in the US. My wife wanted to have a shirt made telling others my cough was not contagious. Kill them with kindness and thank them for their concern.
Sam…
-
Log in to reply.