Discussions
Discussions
Educating others
That is is not going to get any better. I have ppl keep asking are you better do you feel better? There is no getting better. That is the hard part. I have never had this before even with my asthma and emphysema I had no mucus or cough only with an infection.
My family just don't understand it at all. They think I can keep doing what I used to do and its hard even for myself to not be able to do what i used to do. For example the grands had a field and track today. There mom kept asking me if I was coming. I never missed one ever. Even my own kids. No I can't do it. Its along walk to the bleachers and also the wind was bad today. I don't know if they don't want to accept it and can't accept that I have gotten worse. It does cause anxiety for myself not being able to do what they want and what I used to do.
Replies
I try to explain it to them but I really don't think they listen. I post any new bronchiectasis news out to a group for bronchiectasis on FB. There are many ppl with this and say they have it but don't explain what they do for it or how they are treated.
Being a advocate on Bronchiectasis just as you would asthma or copd.
Comments
In the past, when someone asked me about my sickness, I oftenly said to them that I have "cough", instead of having bronchiectasis. It's not really hard to tell other people about the irreversible damage and widening of the airways, and also the mucus accumulation. For me the hard thing is to make people understand about the "bad news" of bronchiectasis.
I failed to make my family understand that bronchiectasis is a chronic disease. My family still believe that there are some ways to repair the damage; that it actually can be cured (not now guys!). My family also still don't understand about my cough, why my cough can't be stopped (my cough will be gone when... my life comes to an end lol). Yeah I know this misunderstanding is happened because the doctors were not able to give firm explanation and understanding to them.
But don't give up to tell and explain others about our condition. If other people want to listen, they will understand about what we are telling. Even if they don't understand about the disease or our struggle, the one that listened to us will give their empathy.
I'm so agree on Gretchen too, when we don't fear and accept the disease, it can be really freeing!
Comments
I have NTM and bronchiectasis. Very difficult to explain to others (my primary care physician has never seen anyone with NTM). I find myself telling others I have asthma. Agree that others may feel the damage is reversible. Staying active and positive is most important.
For those who responded, or those who would like to chime in and share, what would you most want your family or friends to understand about these diseases-what is most important to you? It is difficult to grasp something you have never experienced before. Would it be what you deal with on a daily basis, anxiety surrounding it, or something else?
That is is not going to get any better. I have ppl keep asking are you better do you feel better? There is no getting better. That is the hard part. I have never had this before even with my asthma and emphysema I had no mucus or cough only with an infection.
My family just don't understand it at all. They think I can keep doing what I used to do and its hard even for myself to not be able to do what i used to do. For example the grands had a field and track today. There mom kept asking me if I was coming. I never missed one ever. Even my own kids. No I can't do it. Its along walk to the bleachers and also the wind was bad today. I don't know if they don't want to accept it and can't accept that I have gotten worse. It does cause anxiety for myself not being able to do what they want and what I used to do.
Comments
It was hard to explain to friends and family before I was put on supplemental oxygen this past January. I looked normal, I just couldn't keep up. Trying to explain how important it was for me to avoid catching a cold was impossible. "You can't live your life cooped up all winter," was a common response. I often just went along and said nothing, hoping for the best. If they thought I was winded because I was out of shape, so be it.
The oxygen tank makes it easier. Now I actually LOOK sick. I can say, "I have a lung disease," and that's usually all that's needed.
Comments
yes, I refer to NTM as another "invisible " disorder for many patients who look plans do not carry any visible d m e or visible sign of the disorder. Often, people think we are not motivated, lazy, depressed when we are just unable to function the way we wish that we could , especially when we are experiencing a flare up
It is not our intention to serve as a substitute for medical advice and any content posted should not be used for medical advice, diagnosis or treatment. We make every effort to support our members, our medical professionals cannot and will not provide a diagnosis or suggest a specific medication; those decisions should be left to your personal medical team. While we encourage individuals to share their personal experiences with COPD, please consult a physician before making changes to your own COPD management plan.
Community posts are monitored by the 360social Community Manager, as well as staff respiratory therapists, educators, and other medical professionals.