How to explain bronchiactisis
How to explain bronchiactisis to family, friends etc. and why it's important I take caution when attending events and why I feel it's not necessary to attend certain events. Some people just don't get it.
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It's true. Some people just don't get it. There's not much we can do about that. I just say I have a lung condition. That my lungs don't work very efficiently and I need to protect them from infections. If people are interested or ask questions, I give a few more details. People wouldn't ask someone who is using a walker why they aren't signing up for a 5k run, but our condition is invisible most of the time. (If they were around for a coughing fit or an airway clearance session, they might understand.) We didn't get to choose whether or not to have bronchiectasis, but we do have the opportunity to make choices that are right for us. Most things in life come down to a risk/reward ratio. Would I sit in a crowded theater to watch a movie? No. But would I sit in a crowded auditorium with a mask on to see my granddaughter play the violin? You bet!
Thank you so much. My feelings exactly. Just needed to hear it from a fellow sufferer.
I love the explanation by @pled. In addition, I say the same if asked why I am wearing a mask. I might add (and sometimes do) "If I get even a common cold, I can end up with a serious infection, and I just won't take the risk."
By the way my daughter is on immune suppressing meds, wears a mask in most indoor situations - including at work, and she always graciously explains to people - especially kids.
Just as others have said. My standard line is that I have an uncommon lung condition and I need to be careful about various environmental factors and germs, etc. If they want more info I provide it but not in the first sentence. Everyone needs a topic sentence, right?!
For family and friends, I think providing some education is helpful. This is our journey moving forward and the more the people we love know about it, the better positioned they will be to support us and to ask for the support they need. I keep a tight social circle so if you have a wide social circle this may not be feasible or realistic. I personally don’t think those outside of my inner circle need to be provided any sort of justification for my choices with regard to my health. I have been masking indoors ever since Covid started, many years before my diagnosis. I did this because masking showed me firsthand that I stay far, far healthier when I mask (again, well before my BE/MAI diagnosis). I honestly don’t know why most stopped masking, especially during times of heightened community illness. In any event, like others have posted, since Covid I have and continue to assess risk v. benefit of any sort of group setting and if I choose to engage, and it’s indoors, I mask (with a kn-95 or n-95 mask). Again, this is true for me regardless of my recent BE/NTM diagnosis but I suspect I have stayed so healthy despite my BE/MAI diagnosis precisely because I already had these practices in place.