To add on to this subject, I would like to congratulate my parents, John and Eileen on their 30th wedding anniversary this past Cinco De Mayo, May 5. 30 years ago Tuesday, they said "I DO" and God Bless Them, because they had no idea what they were getting themselves into after that. Marriage seems to be hard enough, but throw in two kids, one healthy and one with a chronic illness and a job that requires 24/48 hours on then off and its amazing they stuck it out.
Jack( my brother) and I surprised them with a party. We had around 50 of their friends join us for dinner at Hackney's in Glenview for burgers and a gathering. Honestly, my parents have so many incredible friends that my brother and I had to cut the list to just 50 because it was growing so quickly. Might I add that not one person said no to the invitation, including family and friends from out of town! They flew in especially for my parents party, and for this surprise. I feel so blessed to be their daughter because of such wonderful caring people they have been friends with over the years. We were able to get their entire wedding party back together for the night, and I am so mad now because I don't think we ever recreated their "wedding" photo. I guess we will have to all gather again for it another time!
Although I was a little stressed the week before the party, I had reason to be. I was planning this event from the hospital. In between treatments and sleep, I managed to call their friends and make sure this would be the surprise of a lifetime. My parents deserved it!
Of course, I am feeling better now and the two week stay in the hospital went better then expected. I was able to get some rest and come out of there feeling refreshed. I was proud of not going too stir crazy and taking it out on the residents/my doctors. (For anyone who has ever taken care of me, I apologize because sometimes I can get a little feisty)
Anyway, I also want to address my question to Gunnar about dating life. If you have not had a chance to click on the link to Gunnar's blog (you should) but in the mean time I will paraphrase my question to him. Basically, I wanted to know how and when to tell someone you are interested in that you have CF without scaring them away, or making it seem like you were hiding something from them.
Growing up in grade school, there were 3 families in our parish that had children with CF. We hosted fundraisers and the community was pretty aware of who we were and everyone in my classes knew I was one of the kids with CF. Luckily, I was not really sick, in fact, I only really missed school when I had doctor appointments and sometimes to stay at home when I had a cold or the flu- but no hospitalizations. So I never had to say anything to anyone, because everyone knew- or if they didn't someone else in the class would tell them for me. Easy!
High school was a little different, but not too bad. I went to Loyola where maybe ten to fifteen of us from grade school went. In the beginning, everyone stuck with people they knew, because everyone was new and scared to branch out. As new sports and clubs and friends were made, I did start telling people about my CF. During my freshmen year end of first, beginning of second semester I was hospitalized for the first time ever, and it was over 3 weeks. My teachers were very supportive and told my classes about CF and why I wasn't in class. They were also very sweet because some teachers made the students write me cards. I remember thinking it was weird that I had a card from someone I didn't even know yet,but I also thought it was very sweet. Anyway, I think word got around that I had CF and it wasn't a big deal. I came back to class, and was the exact same girl as before, only more people knew I had CF now.
College again had that new aspect to it where I would be meeting so many new people and had the option to be open about CF or closed. Looking back, I wish I was more open. I joined a sorority and did not tell many of them until I was in the hospital, and even then I just said I didn't feel good and couldn't make events- did not tell them I was in a hospital room on campus. As far as dating goes though, a friend from high school introduced me to his friends and I began dating his roommate. I told him about CF, but I think he had already known because of our mutual friend (his roommate). Again that made it easier because it wasn't completely out of left field and because his roommate didn't make a big deal about it, just said you know she coughs and gets sick sometimes and has CF but she is still the same girl, I honestly think my boyfriend at the time handled it very well.
Flash forward to now, being 25 and going on casual dates with guys now. My CF has also progressed (keep that in mind) so I cough more often and it sounds worse. Also, I can't laugh anymore without coughing, or almost wheezing and gasping for air. Although my friends are used to it by now, newcomers think I am dying. My face turns red, I am leaning forward, coughing, gasping for a breath in between the giggles, and it sounds like Im a 90 year old smoker. After that a coughing attack might ensue.
My favorite show (Friends) captures how I look and feel:
Most guys I meet are sweet about this, and say something to the effect like "oh sounds like you have a bad cold" I play along and say yes. But if we hit it off, and another date takes place a week or more later, that "bad cold" is still there. I am hoping they don't think I am contagious, because I am not, but I also know this is NOT the right time to tell them about CF.
It's complicated, and I know with every person it is different. One first date someone asked how long I had been a diabetic because they saw my pump, I thought I did a good job hiding it under my shirt, but I guess some of the wires popped out and might have given it away. With that conversation, things got pretty "deep" quickly and I remember telling him about CF at that point as well. At the time, I thought it seemed right and I was upfront and honest. Ironically, this was the same person that a few months later told me he couldn't date me anymore because he needed to be with someone who had a life expectancy beyond mid 30's. (Thanks D-bag)
Lesson learned on that one, maybe being up front and honest wasn't the best. But I can't help it, I hate leaving pieces of my life out of conversations because CF is a part of me, and I have had so many wonderful opportunities because of it, and not sharing it feels like hiding who I really am.
So I was presented with another opportunity to be upfront and honest and I went for it again, and it paid off. I had been on a first date with a guy and things went great. We talked for hours after the date and then continued texting even the rest of the night. We agreed to have our second date for the following Saturday. I was looking forward to it, but of course Friday night rolls around and Ive got a fever and coughing blood, so to the ER I go. Knowing very well I had an infection and would need to be admitted, I was upset about my date the next night. I had two choices Saturday morning: 1) Tell him "Something came up, and I can't hang out tonight as planned" 2) Tell him I had CF, I got sick and need to be in the hospital for a while, but that he is welcome to come visit.
Plan 1 seemed ok, but lets be honest, it sounded like I was flaking on him last minute and I wasn't really interested in him.
Plan 2 seems extreme but showed that I wasn't lying and I did want to see him, but I really couldn't.
I went for it: I told him a little about CF and that I was in the hospital and he was welcome to come and we can get food and have our second date there.
He showed up with dinner for me and we spent the rest of the night(in the hospital) talking about everything, including a little more about CF so that he could understand some.
That was one of the best decisions I've made. We dated for a while, but decided we are much better as friends and remain very close to this day. (Yes, I know you read this blog, and I know you know who you are) :)
So lesson learned on that one as well. Sometimes being truthful and honest does pay off.
I know this topic is very touchy and hard for everyone involved. Can you imagine meeting someone and hitting it off so well but then they basically drop a bomb saying they have a chronic illness? Not only that, but for those of you with CF or who live with some with CF, you know there is more than just the WebMD complications that go along with this disease. We also know that looking it up on Wikipedia is the WORST thing ever! Please tell anyone who wants to learn more about CF to ask you about it rather than looking it up, no matter how uncomfortable they might feel.
I have learned that it doesn't only apply to those with CF but other diseases, complications, or ailments that there is no standard definition. What may be true for one person, might not be for the next, even if the disease or ailment is the exact same. That is what is amazing and complicated about the human body.
Looking back at my original question though I respect what Gunnar did by asking some of his exs if they ever thought of him as just his disease or as himself. The consensus is they all saw him for himself, and the CF was just something that came along for the ride. That is the way I need to approach life. I am who I am, and my future dates can choose to like all of me or not, but I cannot and will not change who I am.
So if any of my old dates, rendezvous', encounters, flames or anyone want to chime in on this topic, you are more then welcome to message me privately and let me know what you really thought of me in terms of CF or dating someone with a chronic illness and how you were able to look past (or weren't able to look past it).
No hard feeling, I promise :)
As for now, I will keep playing it by ear and find the right time to share my true story with people but I am much more open to sharing my illness and educate people on what Cystic Fibrosis is. It is nothing to be ashamed of or upset about. Yes, it sucks and yes I have cried and will continue to cry more than you can imagine about having it and getting sick but it has made me who I am. I am a fighter, I am feisty, I am funny and (apparently good at alliterations) I am this way because of CF.
Bring it on!
Again, thank you Gunnar for responding to my email and opening up the world to this important topic that many of us with CF, and many others with other invisible illnesses deal with.
