Dating with a terminal disease like cystic fibrosis is one of those things that is so difficult to do whether you’re a teenager or an adult. The question that would always pop into my head is when to reveal it. It’s like deciding when to light the match and potentially blow up the relationship. It can’t be easy for the other person either because no matter what your reaction is, I’m going to read into it. I’ve had women I’ve dated not call me back after they find out I have CF and I’ve had women who were totally understanding. The problem is that once it’s out in the open, I’m going to be thinking two things. One) Are you really with me because you love me or is it because you feel sorry for me? Two) Am I being fair to you by sticking around knowing I could be hospitalized at any point and I probably will not be able to have children?
My dad once told me that the advantage I have over most people is that the person I do find will be special because she can accept all the awful things that CF brings to a relationship and still love me for who I am. That’s what I found in my wife. That’s what I hope everyone finds in their partners.
Still just because I’m married and now with kids that we had through in vitro fertilization doesn’t mean the CF guilt just disappears. I still feel bad when I have to do my therapy when I could be helping my kids with their homework or watching a movie with my wife. I still feel bad when I’m coughing so much that my wife and kids can’t hear what’s on the television set. I still feel bad that some of my family members have to take less stuff on vacation so daddy can take his machine and nebulizers and fit them in the car. I still feel bad when we have to leave someone’s house early because I have to do my treatments. I still feel guilty when I’m on a double-date and I can’t drink alcohol with everyone else because I’m on tons of antibiotics. I still feel guilty that though neither of my children has CF that both are carriers of the disease.
Relationships and cystic fibrosis can work together though. My best advice is not to have a schedule in your head as to when to reveal the big secret to someone you’re dating. I used to hide my pills or take them in the restaurant restroom. I hid my therapy equipment when I brought a girl home. I sprayed Pledge in the restroom after a CF bathroom break so that she did not leave me after whiffing the odor. But still, I think you tell someone when the time is right. I’ve mentioned it on first dates, second dates, fifth dates, etc. I had my own spiel at one point in which I would warn them not to read about my disease in books as it would only scare them and that I’d be glad to answer any questions. Truth is though that I never used it. My response to the subject of CF was usually “I’d rather not talk about it.” It was a negative subject for me and I hated when it was brought up. I hated the morbid subject of a very possible shortened life and the way it made me feel guilty for even broaching a relationship with someone. Was I truly being fair to them by dating them? Andrea made me realize that’s it was HER choice if she wanted to date me and she loved me for who I was and not just because of the cystic fibrosis though it was a big part of me BUT definitely not the only part of me. I was funny, hard-working and made Brad Pitt look like Gilbert Gottfried. Okay, just making sure you were paying attention.
Anyway, with “Five Feet Apart” out in theaters and dating with cystic fibrosis being discussed, I thought I’d give my two cents. The thing is that all we can do is be honest when the time is right and let the other person decide whether he or she is prepared to deal with that part of us. And if they are, we need to relinquish some of that guilt and enjoy that special person because any partner who can love someone despite cystic fibrosis is truly “special.”
There are no dress rehearsals in life. We were born with this disease but we don’t have to let it affect every part of our lives. Let it do what it did for me…and find the most amazing person you could ever dream of and love that person till death do you part.
Live your dreams and love your life.
Andy