Non-CF friends not "getting it"

[anonymous]

Even before DS was born and diagnosed with CF, I had friends drift away. I'd try to keep in touch with Xmas cards, letter and emails, but some people are too busy or involved with their lives. My mom, who has moved around quite a bit, still keeps in touch with friends from college via email, letters, phone calls, etc. and it drives me nuts when she asks about a friend from high school or college and I have to say, I don't know! I try to keep in touch, but what can you do.

I pretty much "fired" a friend in college who took me aside one day to tell me her priorities -- first comes school and getting my nursing degree, then comes ted (boyfriend), then family and IF I have any time after that, it would be friends. Geez, I've always felt that if someone needs me -- drop everything and be there for them. I don't get the "levels of friendship/priority issue".

A couple of times we get the accusatory comment about DS --- well, he doesn't LOOK sick. DH doesn't even bat an eye -- just says, well, the genetic tests from Mayo say otherwise. Last summer someone idiotic relative made some comment about how DS "sure was high maintenance" and I wish I could've come up with a snarky response, but I was just stunned.

Liza

 

[anonymous]

Even before DS was born and diagnosed with CF, I had friends drift away. I'd try to keep in touch with Xmas cards, letter and emails, but some people are too busy or involved with their lives. My mom, who has moved around quite a bit, still keeps in touch with friends from college via email, letters, phone calls, etc. and it drives me nuts when she asks about a friend from high school or college and I have to say, I don't know! I try to keep in touch, but what can you do.

I pretty much "fired" a friend in college who took me aside one day to tell me her priorities -- first comes school and getting my nursing degree, then comes ted (boyfriend), then family and IF I have any time after that, it would be friends. Geez, I've always felt that if someone needs me -- drop everything and be there for them. I don't get the "levels of friendship/priority issue".

A couple of times we get the accusatory comment about DS --- well, he doesn't LOOK sick. DH doesn't even bat an eye -- just says, well, the genetic tests from Mayo say otherwise. Last summer someone idiotic relative made some comment about how DS "sure was high maintenance" and I wish I could've come up with a snarky response, but I was just stunned.

Liza

 

[serendipity730]

Sonia,
I have had similar experiences with friends. Honestly, I have only ever had like 2-3 friends in my whole life who "get it." I've only ever had one friend who visited me in the hospital. I had a lot of trouble with this in high school. When I confronted a friend about it, she said she was busy. I think there are three reasons why people don't get it. First off, they probably don't know as much about CF as they ought to, having us as friends. Therefore, they don't understand the significance of being in the hospital etc. Also, since, we do normal things like marry, work, have kids, and what not, they don't see how we are sick. Lastly, people do not do well around illness. Like Allie said, people are simple. They don't like to think outside their comfort zone. None of these reasons are good excuses. I can't believe that your friends wanted you to send flowers to someone when you were in the hospital. I agree with others that you should call them out on this. It might make you feel better.
This is a little different, but every year my family does the Great Strides walk. Last year, I hung up the flier in the lounge, where my classmates and I each lunch, etc. I am in a graduate program for genetic counseling, so they all know exactly what CF is and that I have it. Aside from professors, only 3 of the 25 people donated. I was crushed. I took it very personally. How could these people who are supposed to be my friends not give $5??
It sounds awful, but I think that the best approach is to not have expectations. I know this is hard, and I fail at it time and time again. Once, when I was in high school and very upset about my friends not caring, my mom told me that it takes a special person to recognize all I go through. You and I are both lucky, because we have found at least one special person and married them!

 

[serendipity730]

Sonia,
I have had similar experiences with friends. Honestly, I have only ever had like 2-3 friends in my whole life who "get it." I've only ever had one friend who visited me in the hospital. I had a lot of trouble with this in high school. When I confronted a friend about it, she said she was busy. I think there are three reasons why people don't get it. First off, they probably don't know as much about CF as they ought to, having us as friends. Therefore, they don't understand the significance of being in the hospital etc. Also, since, we do normal things like marry, work, have kids, and what not, they don't see how we are sick. Lastly, people do not do well around illness. Like Allie said, people are simple. They don't like to think outside their comfort zone. None of these reasons are good excuses. I can't believe that your friends wanted you to send flowers to someone when you were in the hospital. I agree with others that you should call them out on this. It might make you feel better.
This is a little different, but every year my family does the Great Strides walk. Last year, I hung up the flier in the lounge, where my classmates and I each lunch, etc. I am in a graduate program for genetic counseling, so they all know exactly what CF is and that I have it. Aside from professors, only 3 of the 25 people donated. I was crushed. I took it very personally. How could these people who are supposed to be my friends not give $5??
It sounds awful, but I think that the best approach is to not have expectations. I know this is hard, and I fail at it time and time again. Once, when I was in high school and very upset about my friends not caring, my mom told me that it takes a special person to recognize all I go through. You and I are both lucky, because we have found at least one special person and married them!