Disclosing CF in new relationships

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LouLou

New member
I thought it might help eachother to hear others experiences with how people reacted when they learned of our CF.

I have always been pretty open about having CF in relationships I've had in life except in the workplace. Up until 7th grade everyone that knew me knew I had CF. The summer between 7th and 8th grade I moved. Parents this is a bad time to move in case you didn't realize. During my 8th grade year (worst year of my life) I went back for a visit to my old community. One of my dear friends whom I'd fell out of touch with came up to me and said she thought I was dead. I asked her why she thought such a thing and she told me that these twin brothers had spread a rumor that I'd died because I have CF and that this would explain why some people hadn't heard from me. To give myself credit I was staying in touch with 30+ people!! This experience made it so I didn't tell people of my CF until I knew them for a while and saw that I was like everyone else in my capabilities. Recently I have been trying to disclose earlier in the relationship if for no other reason to help spread CF awareness.

So here are some disclosure reaction stories:

I thought I'd start out by saying most result in 'What's That?' or 'Oh you're so healthy looking. I'd never have known. I had a childhood friend (or co-workers child) die from that' or 'How does it effect you?'

1) I went to YMCA Camp Hi Rock in Mass for a few summers. I was dropped off at my cabin with my huge trunk for a two week stay. I was so excited and nervous I'm sure. I was setting my bunk up getting things just the way I wanted when in walked my cabin's counselor. She introduced herself and asked my name. I told her who I was and she started to cry or rather sob so bad that she ran out of the cabin and didn't return for a while. When returned, with a whole lot more composure she proceeded to tell me that she'd lost her best friend to CF in grade school. She knew I had CF from my records and when she saw me it brought about a lot of emotion.

2) One of my more serious high school boyfriends was a guy named Paul. I hadn't told him about my CF yet. One night we were laying in my hammock in my back yard looking at the stars when he said.... "So I was talking to my Dad and I was telling him about your cough you have that you say isn't contagious and he asked me if you take medicine when you eat. I told him yes why? He responded non-chalantely, "Oh she probably has Cystic Fibrosis." I about jumped out of the hammock I sure hadn't ever had anyone guess I had it. It turns out his Dad was a leading researcher for nasal polyps. Funny thing is I married this guys cousin so now Paul and his Dad are family.

3) Finally, I will end with with my most recent disclosure I made around 30 min's ago. I met a girl for a drink on Monday that I'd never met. Someone thought we should meet so we decided to meet as we're both new to the area and looking for friends. We hit it off. She asked on email this AM if I wanted to get a pedicure ...here's a clip from my email. The article I mention I got from the forum - thanks guys.

"Here's the article. I won't be offended if you choose not to read it but knowledge is power so I had to share <img src="i/expressions/face-icon-small-smile.gif" border="0">
<a target=_blank class=ftalternatingbarlinklarge href="http://www.msnbc.msn.com/id/11641584/
">http://www.msnbc.msn.com/id/11641584/
</a>Call me a hypocondriac - I have to be because I have compromised lungs due to have a genetic disorder called Cystic Fibrosis... heard of it? - - - eitherway it's just gross!
I'd love to go for a pedicure Monday night somewhere that is jet free... Thoughts?"

Her response, "You have CF? I had no idea. How is your health? Yeah I know about it, friends of my parents have it and the husband got a double lung transplant like 6 years ago."

She makes it sound like both people, the husband and the wife have CF - I'm still emailing with her about this...

So tell your interesting disclosure stories...
 
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anonymous

New member
Awwww reactions, always priceless and interesting. So I always got really bad reactions because I look extremely healthy. I would tell people when I was younger, like before junior high. I didn't care until I had a really bad experience and after that I didn't tell anyone. I never told boyfriends because they always freaked out on me-- like I was going to die on them in the next 10 seconds. I told my friends but only because they have been my friends since junior high. I only just recently have been telling people about it and talking to others about it because we are trying to raise money at my dad's store. In fact they have my senior picture up there with a blurb about donating to help people like us. So here are my experiences, from when I was young til now:

1. My 2nd grade teacher told me that I was only using my CF to get out of a test so I could go use the bathroom. She seemed to think that my tummy didn't hurt nearly as bad as it did.

2. In 6th grade when I was horsing around during recess I ran into a chair with my side, as the day went on my side got worse. I finally went to the teacher and asked if I could go to the nurse because I couldn't breathe very well. She said that I was fine and my CF couldn't effect me so quickly. I just left the room and ended up going to the emergency room and had a couple bruised ribs. Hmm!

3. My most recent experience is with my current boyfriend. We were friends for about a year, we would go out with our mutual friends but he had a girlfriend and I buried myself in my job. No one liked his girlfriend at the time so the other 2 couples and him and I would all go out to dance or whatever. The 'light bulb' finally came on but he still didn't know about my CF, all of our friends knew but he didn't. It wasn't until his best friend started to light a cigarette and said oh wait I can't because Steph can't be around smoke and went outside. So Luke, my boyfriend, asked his mother why that would be and she told him I probably have a heart or lung disease. He then asks me, "Do you have some kind of heart or lung disease that I should know about?" This was after we had been dating for a month and a half. "Whoops," I say, "I must have forgotten to tell you." So that was that, by the way I am still with him and he is my number one percussion therapist when we go camping with his parents. <img src="i/expressions/face-icon-small-happy.gif" border="0">
 
T

thelizardqueen

New member
I've had an assortment of reactions, but here are the most popular ones:

1. I was in the 1st grade, and became really quick friends with this girl. I told her that I had CF one day, because she questioned my continual cough when I was sick. When she found out I had it, she sad she didn't want to be friends with me because I might die someday. Later on her mum explained to her all about CF, and we ended up being the best of friends for about 10 years. We still stay in contact to this day.

2. I was 17, and had this group of friends that I was really close to, but had never disclosed my CF to them. I finally bit the bullet and informed them all about what CF was, what was involved, etc. Out of my 4 friends, 3 of them were cool with it. The 4th friend started crying and said that I was going to die some die. I informed her yeah, I'll die someday, and so will she, so will her boyfriend, we'll all die. To this day, that friend asks me if I'm going to die everytime I get sick. She just doesn't get it.

3. I was 20 and dating this really nice guy. We'd been dating for a good month before I told him about my CF. When I told him that I had it, he seemed cool with it because I wasn't usually sick with it. When I got really sick once, he complained the whole time, and eventually decided that a life of CF wasn't for him because I couldn't go out and "party".

4. I met my current boyfriend online. We hit it off right away, and so on the 4th date I decided to tell him about my CF. He told me that that very night he recearched it, and decided that he was very cool with it. That yes it may suck, but at least it would suck with him by my side.

For the most part people are accepting of my CF. There are a couple that just don't get it. But really I've only had 2 or 3 people turn me away because of it. Majority of people think that CF comes 2nd to me as a person.
 
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