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How do you explain your disease to the uninitiated?
Sooner or later we have to explain to people why: 1) we're taking our own water to the restaurant, 2) we can't enjoy their new jacuzzi, 3) we'd prefer to eat early in the evening and have to be home earlier to do our airway clearance 4) we can't sit on the patio because of the mister, 5) we need to wear a mask if it's windy outside, etc etc etc.
I'd like to be able to tell folks who ask about my bronchiectasis and NTM infection without having their eyes glaze over. Some people (like family and close friends) may want the long explanation, but for everyone else I'd like a very short and precise down-and-dirty few words.
What are all of you saying out there about your health problems?
Thanks!
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I will be interested in the responses you get back! This is a wonderful online support group! I’m sure you will get many responses!:)
I simply tell them I'm dealing with an auto-immune issue that causes a non-contagious cough. I spare them the rest of the story.
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1 Reaction"chronic lung condition that no one has heard of that makes me susceptible to infection. Not contagious."
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7 ReactionsBecause I’m new to the diagnoses, I have burdened many with a LONG explanation about BE and MAC - thank you for some nice succinct responses! I did reduce my answer to atypical tuberculosis a few times, but that scared folks. 😕
@gallahad
Good riposte for any questioners I always follow up something similar by saying jokingly ,”its boring ,kinda like psoriasis ,you got it for life but it aint gonna kill yah!
Even recently on the plane I said”to the young woman sitting next to me” I have a chronic lung disease and I might be coughing. I am not contagious” and she said she did not care. But the funny thing is the was sniffing her nose all the flight- probably allergies because she was not blowing her nose.
Hard to know sometimes what to do...just as we are all different in our journey with Bronchiectasis all people are different in what they may or may not want to know.
Also, sometimes a true explanation leads to someone saying I know of another person who has it...and that can lead to important and nice exchanges and a possible contact of another with Bronchiectasis.
So, which route we choose to take to explain just depends on many factors but having a choice is what is important and learning when and when not to "educate" others and give a full explanation .....OR NOT.
Some of the people I mention it to ask "have you seen the advertisement about it?" Meaning the Brinsupri ad.
Barbara
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1 Reaction@coffcoff Some great suggestions here - I refuse to be one with a litany of "can'ts". I get a lot of practice giving short answers for health issues, because I also have some significant food allergies and a few other invisible conditions. But in truth, most people care more about themselves than me, so once assured they have done nothing to give offense they are fine.
My short answer to bronchiectasis is "A little-known lung condition sort of like COPD. It makes me susceptible to some scary lung infections, so I take precautions like wearing a mask [and drinking only sterilized water.] Sometimes I find it wise to stay home/stay out of indoor crowds. If I cough, it doesn't mean I am sick or contagious."
I only address issues like misters, hot tubs, indoor pools or airway clearance if they are germane to the current conversation.
The only time I am more assertive is when I say "No, thank you" and they push with "just one time" or "just a little [while]" - then I expand and tell them how awful it is for "normal" things to make me sick - sometimes for days or weeks.
PS I don't carry my own water to restaurants - I have decided that for me, drinking bottled spring water, or bottled/canned soda or beer, is "good enough" on those occasions.
Thank you everyone. Some great ideas and suggestions.