When do you tell?
Telling another person I have CF can be a calculated move or a desperate measure to have them shut up about my mucus filled breathe. I have been at plenty of causal social gatherings where CF has never come up. Its when I cough more than 3 times or as a more recent occurrence, clearing my throat, questions are asked, comments are made. Attacks are also a great way for new people to be initiated into my diseased life. A couple of weeks ago celebrating after a USC win I told several guys I went to college with I had CF. I didn't know these guys very well, I would call our relationship a partyionship. We saw each other at Greek events. You don't really notice coughing when there is music or a dark dance floor. Let's face it, drunk people are not too observant. Also, back in the day, I could go for hours without coughing and I was not clearing my throat! I had gone all day without anyone noticing my problem. At the bar where we were watching the game TVs blared, old friends were reconnecting and bathroom breaks perfectly timed all added up to a great noise barrier. I have excellent avoidance skills! Our group of friends then ate dinner and planned our next move. I ate dinner with several people and was able to take my enzymes like a ninja. Later at the Karaoke bar, it seemed I had to clear my throat more than usual, making me think I had been exposed to gluten. I tried to turn away, but inevitably one guy asked, "Are you OK? Are you sick?" No, I am fine, well I have cystic fibrosis (I've learned do not avoid or indirectly answer a drinking person's question), it is a lung disease and I just need to get it out. He stared me down, pondering the words I just said calmly. "Wow that sucks. What exactly happens?" I then gave him a brief synopsis of what my lungs aren't doing. The other two guys just kind of stood there. The first guy again confirmed what I had was awful, he might have said sorry. A wave of relief swept over me, I don't think anyone has ever been that frank with me. It was nice to have such a open and clean response. There was no pity, no awkward silence or questions of how do you feel about that? He just accepted it and moved our conversation in a completely different direction.
Later on a couple of us were standing outside, these guys were smoking and all of a sudden I couldn't stop coughing. Another guy just put his arms around me and didn't say anything. My girlfriend who knows the situation said to all of the guys, she is OK, she just has to cough. I can only imagine the looks on their faces. She also told the smokers to move! The other two guys then asked a question or two about what their ears had heard. With disbelief in their voices they just kind of let it go. I've decided telling people while they are drinking is the best! When I could breathe again I thanked the guy for being a buffer and told him I just had to cough like that and not to worry. Maybe the alcohol makes them react less or they were just cool guys. They could have cared less or been thankful they didn't have CF. Whatever the reasons it was nice they just let it be.
I wish I could just let CF be. Let it be with the rest of the details that make up me. Except living with CF and having other people deal with CF is by no means a small detail. Having CF is the explanation to why I do what I do. Who I am and how I view the world is laced with CF. So here I am on a date, I want to be known, I am explaining myself to someone to see if they like me. And I feel I am hiding this secret life. I say I don't have a lot of time, don't travel during winter months or that I took another semester to finish college. I can get away with a CFless explanation, but after a while I am holding back information. Eating was part of the dating activity and I didn't take my enzymes. I've done this plenty of times and used my ninja skills to take them. Of course taking enzymes is a perfect way to introduce CF I didn't want to take a risk.I wanted the guy to know great things about me, maybe some weird things, but not deadly things about me.
So on to date two and CF never came up. It didn't seem right to bring it up. So now I totally feel like I'm withholding information. He probably could sense I was not telling him something. I also have a hard time being close to someone. I don't want to cough on them. It was also miserably cold so when we were walking I was holding my jacket and scarf so close to my face, controlling my breathing, hoping my lungs won't freak out. Which they didn't. I kind of coughed around him, but nothing serious. I was in the clear. So we ended up going out again and I thought this is it, he has to know. And I couldn't do it, I built it up so much in my head about perfecting timing and I missed it. I haven't heard from him, so he probably thinks I wasn't interested or it was something else I said...
I've gone back and forth if I was the other person, when would I want to know? I haven't come up with an answer because I don't think there is a perfect time. There is acceptance and I'm struggling with accepting myself some days. Dating hopefully turns into thinking about a life together. I have enough trouble picturing a long adult life so I barely expect someone else to be capable of doing it. I totally cheated myself. I could have been accepted, he could have wanted to learn more, could have been reason enough for him to invest more time or he could have said, oh I have a friend with CF I got this. Since I am still having trouble accepting myself, CF is causing confusion. I view it as a deal breaker. Through sickness and health is a nice saying, when it is in your future. It's my reality now and I just don't know when is a good time to introduce that reality tv freak show to others.
Later on a couple of us were standing outside, these guys were smoking and all of a sudden I couldn't stop coughing. Another guy just put his arms around me and didn't say anything. My girlfriend who knows the situation said to all of the guys, she is OK, she just has to cough. I can only imagine the looks on their faces. She also told the smokers to move! The other two guys then asked a question or two about what their ears had heard. With disbelief in their voices they just kind of let it go. I've decided telling people while they are drinking is the best! When I could breathe again I thanked the guy for being a buffer and told him I just had to cough like that and not to worry. Maybe the alcohol makes them react less or they were just cool guys. They could have cared less or been thankful they didn't have CF. Whatever the reasons it was nice they just let it be.
I wish I could just let CF be. Let it be with the rest of the details that make up me. Except living with CF and having other people deal with CF is by no means a small detail. Having CF is the explanation to why I do what I do. Who I am and how I view the world is laced with CF. So here I am on a date, I want to be known, I am explaining myself to someone to see if they like me. And I feel I am hiding this secret life. I say I don't have a lot of time, don't travel during winter months or that I took another semester to finish college. I can get away with a CFless explanation, but after a while I am holding back information. Eating was part of the dating activity and I didn't take my enzymes. I've done this plenty of times and used my ninja skills to take them. Of course taking enzymes is a perfect way to introduce CF I didn't want to take a risk.I wanted the guy to know great things about me, maybe some weird things, but not deadly things about me.
So on to date two and CF never came up. It didn't seem right to bring it up. So now I totally feel like I'm withholding information. He probably could sense I was not telling him something. I also have a hard time being close to someone. I don't want to cough on them. It was also miserably cold so when we were walking I was holding my jacket and scarf so close to my face, controlling my breathing, hoping my lungs won't freak out. Which they didn't. I kind of coughed around him, but nothing serious. I was in the clear. So we ended up going out again and I thought this is it, he has to know. And I couldn't do it, I built it up so much in my head about perfecting timing and I missed it. I haven't heard from him, so he probably thinks I wasn't interested or it was something else I said...
I've gone back and forth if I was the other person, when would I want to know? I haven't come up with an answer because I don't think there is a perfect time. There is acceptance and I'm struggling with accepting myself some days. Dating hopefully turns into thinking about a life together. I have enough trouble picturing a long adult life so I barely expect someone else to be capable of doing it. I totally cheated myself. I could have been accepted, he could have wanted to learn more, could have been reason enough for him to invest more time or he could have said, oh I have a friend with CF I got this. Since I am still having trouble accepting myself, CF is causing confusion. I view it as a deal breaker. Through sickness and health is a nice saying, when it is in your future. It's my reality now and I just don't know when is a good time to introduce that reality tv freak show to others.