I think it's most appropriate for the person with cf to call the shots about who knows and who doesn't. It's a challenging topic that isn't one size fits all...like so many things with cf. For example, someone who goes into the hospital for regular tuneups is going to have a lot more to explain to their schoolmates than someone like me that never was hospitalized from age 5-18. I was very open about it when I was in elementary school and then had an 'incident' in junior high. From that point onward, I only told people after they had known me for a while and then even then I only gave the full talk to dear friends. In high school I would enter most new relationships - friends and boyfriends - without them knowing and then I would disclose when it came up...taking pills, having to do treatments, pt, etc. My mom would often tell friend's mothers about my cf probably so they wouldn't worry I was going to get their kids sick.
Regarding work, I never ever would mention it during an interview. My parents coached me about discrimination and how I should be judged for who I am and what I am capable of without the added complication of the employer knowing I have cf. They may have started this too young and been part of the blame for my "I'm better and healthier than all you other cfers" attitude that I still work through. Although I think it was a way of life and the way my parents motivated me to stay healthy. If I could count the number of times I got the lecture about doing what I can to maintain lung function for when the cure comes it will only stop it in its tracks not take away any damage. And how I was blessed to be so healthy (as compared with most with cf) and how it wouldn't always be this way if I didn't take care of myself. I am glad my parents did this training. My parents were also open about the fact that I really, really need insurance from a young age and how I needed to do what I could to maintain that. They might have crossed the line to tell me that they are pretty sure that my dad was likely once let go because of the effect I had on the company's insurance policy but either way it was a good lesson for me to add to my "insurance" knowledge. Lately, I am more open about my cf. I enjoy informing strangers. I feel empowered and like I'm special
Fundraising and awareness are the root of my openness these days. Most recently I solicated my whole company to join my Great Strides team... at the very least I hope the majority will make a donation.
I find it takes about 6-12 months on a job to get the recognition that I'm very appreciated before I drop the cf bomb on them. I like to show that I am more capable of an employee than most and that I am not a liability. Of recently, I've learned it's only as big a deal as I make it. People are starting to "get it" that there are varying degrees of cf. Especially, after they've seen me at work often taking less sick days than the "healthy" employee.
Regarding work, I never ever would mention it during an interview. My parents coached me about discrimination and how I should be judged for who I am and what I am capable of without the added complication of the employer knowing I have cf. They may have started this too young and been part of the blame for my "I'm better and healthier than all you other cfers" attitude that I still work through. Although I think it was a way of life and the way my parents motivated me to stay healthy. If I could count the number of times I got the lecture about doing what I can to maintain lung function for when the cure comes it will only stop it in its tracks not take away any damage. And how I was blessed to be so healthy (as compared with most with cf) and how it wouldn't always be this way if I didn't take care of myself. I am glad my parents did this training. My parents were also open about the fact that I really, really need insurance from a young age and how I needed to do what I could to maintain that. They might have crossed the line to tell me that they are pretty sure that my dad was likely once let go because of the effect I had on the company's insurance policy but either way it was a good lesson for me to add to my "insurance" knowledge. Lately, I am more open about my cf. I enjoy informing strangers. I feel empowered and like I'm special
Fundraising and awareness are the root of my openness these days. Most recently I solicated my whole company to join my Great Strides team... at the very least I hope the majority will make a donation. I find it takes about 6-12 months on a job to get the recognition that I'm very appreciated before I drop the cf bomb on them. I like to show that I am more capable of an employee than most and that I am not a liability. Of recently, I've learned it's only as big a deal as I make it. People are starting to "get it" that there are varying degrees of cf. Especially, after they've seen me at work often taking less sick days than the "healthy" employee.