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Communication with family and friends
Hi all -- how do you approach expressing your needs re: your illness with friends and family? For example, if you need them to stay home when they have a cold so you can avoid infection or you would prefer to stay inside rather than engage in an outdoor activity. What seems to work in communicating what is best for you?
Replies
I like that -- being direct and clear about it. I bet that gets easier as you assert yourself, and (hopefully) as friends and family respond in a supportive way. Thanks, K.
My 18 month old daughter has cystic Bronchiectasis. We also have two other beautiful children ages 9 and 5. We are very close to my parents, my aunt's and uncles as well as my grandfather. We try to get together as often as we can but since my daughter has been born we have found it increasingly difficult to do so. It takes a lot more planning and questioning them about recent health status. I start asking 2 weeks in advance and then a week later and then basically everyday until the event. They do get upset at times because last minute we have to cancel. Outdoor activities are especially hard on her so we always have to have a back up plan. I have tried my hardest to educate them on her disease as much as possible but unless you live it everyday it can be difficult to fully understand.
I suck at this, so I'm hardly one to offer advice! :) But I agree that it takes practice and assertiveness. I also try to condense my explanation as much as possible, for example: "I have a rare lung infection that makes it really hard to _____ (be active / go out on hot days / swim / etc.)." I don't miss being on supplemental oxygen, but it was easier to explain when I looked not normal. I have actually considered carrying a cane for that reason. Weird, huh?
Comments
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Kristen,
Great question. It takes time to learn to say the simple, yet powerful words, " No, I cannot do that today".... Many of us do not look as if we have a chronic disorder and most people do not comprehend how some weather conditions greatly impact us.
I will not stay out for long on hot, humid days for anything anymore. I do not feel that the price my body pays is worth it. Getting sick, feeling exhausted is not worth it. We can compare these weather conditions to an allergy; many of our bodies are just overly sensitive to severe heat and humidity and react to the conditions.
Mycobacteria thrive in humid conditions. I do not feel that staying outdoors on these particular hot and humid days is worth taking the risk.
Merry,
Yes, weird is right. Visible signs like oxygen or a cane enable others to comprehend that we have a chronic issue.
Many push us to do things that we are incapable of doing, especially in the summer heat since we look like everyone else,
It has taken a long time for family and friends to understand and accept my limitations.
My mind wants to do so much more than my body is capable of doing
She looks normal,
Hello! Is it possible for family members to give you a break , respite on some if the occasions when you have to cancel?
Canceling over and over again does become frustrating. Hopefully, if a family member or friend could assist you with your child for a little while, you would be able to attend a function even for an hour .
Comments
Kristen,
Thank you for your positive words.:))
It has taken time to get to this point. So many still do not understand my limitations; however, I now make the choice which is best for my health .
As the stewardess states on the airplane " you must take care of yourself first ...", before you can assist others ...
We must learn to practice the same on a daily basis.:)
Kristen,
Thank you for your positive words.:))
It has taken time to get to this point. So many still do not understand my limitations; however, I now make the choice which is best for my health .
As the stewardess states on the airplane " you must take care of yourself first ...", before you can assist others ...
We must learn to practice the same on a daily basis.:)
I am not good at this but I love your advice. Accepting the condition of our body and be direct. That's something that I need to do more :)
She looks normal,
Hello! Perhaps, when the timing is right- you could mention how grateful you would be if someone could offer you such a gift of time, care taking.
Some people just don't think of the whole picture. It is not that they are being self centered , they just may not think about the details of your current situation is. As the old cliche goes, " you don't know unless you have walked in the other women's shoes...".
Bringing you matierials gifts , such as desserts, treats just does not cut it when you just need to be connecting with others occasionally.
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Yes stick to your guns if you don't feel like it or can't do it say so. I say how it is don't beat around the bush. Again none of us look sick and ppl have a hard time getting that! Sick Lungs Don't Show. My kids call, "Were out at the pool!!" I can't come today its to hot humid not good for me!! That is it!
Kandy,
I love how you handle these situations- honesty is the best policy. People , who matter to you may learn to accept these conditions over time.
It is not worth pushing ourselves and getting sick
Kandy,
I love how you handle these situations- honesty is the best policy. People , who matter to you may learn to accept these conditions over time.
It is not worth pushing ourselves and getting sick
Hi, all--
I am in my early 60s, so that may make it easier for people to understand limitations. I am a very direct speaker, so I have no problems clearly and unapologetically stating my issues and needs. So far, no problems.
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