TODAY’S FORECAST: Sleepy
One of the most frequently asked questions I get about having Cystic Fibrosis is how I tell people about my disease. I’ve always been pretty open about my health; but honestly, it really depends on the situation. For example, in my younger years, whenever I took a job, I did not feel it necessary to disclose that I had CF. I was relatively healthy in those days, and unless something major happened that required significant time off, I was fine to let people keep on believing that I was capable and reliable. When it came time that I was having more complications and needed to be out more frequently for surgeries and procedures, I let my bosses know individually that I had CF. Not one of them had a bad reaction of any kind. In fact, I think that there was often a certain degree of respect I attained because people knew that in spite of my situation I could be counted on to find a way to go the distance. I never used CF as an excuse to take time off or to lessen my workload, until it became absolutely necessary.
With personal relationships I never hesitate. When we moved into our Stow house, I was very ill with pneumonia, so I was on IVs when we started to meet the new neighbors. Imagine taking a “welcome” dessert or a dinner next door to a new neighbor who comes to the door covered in IV cords and breathing contraptions. That’s how I met my neighbors. Luckily, my next-door-neighbor was a nurse and was familiar with CF. She knew the CF staff at Akron Children’s and it made for a very smooth transition into what could have been a difficult situation. All of the other neighbors were accepting too. I’m sure word quickly made its way around that I had CF, but everyone was very supportive and kind, especially when I was sick and needed some extra hands.
In our new house, our next-door neighbors have been just as accepting. I had surgery not long after we moved in, so I shared with them that I have CF and that surgeries and treatments are part of my normal world. Especially when their kids started spending more and more time with mine at our house, I wanted them to be comfortable that if the kids were seeing any of my equipment or my meds that they would know what they were for. Other neighbors have discovered through Facebook friendships, my blog posts, etc., that I have CF. So far no adverse reactions; everyone has been really supportive.
In college, my first roommate had been a good friend in high school, so she already knew my situation going into school. In fact, both our parents had written letters to the housing committee asking that we be placed together our freshman year, which BGSU granted. When I moved into an apartment with new roommates, I was so easy-going about my CF that I think they naturally just accepted it as part of who I was. They knew I was taking meds and going to clinic on breaks, but no one really said boo otherwise.
Dating relationships were trickier. It depended on who I was dating at the time and how serious it was. Hanging out at a bar with someone I just met for a beer did not constitute a CF conversation. Dinners or lunches out sometimes caused a raise of eyebrows when I downed a handful of pills, and if they asked, I was honest and upfront about them. For me though, I never really just dated around a lot, which made things somewhat easier. In fact, during college, I dated the same guy for three and half years. His Dad especially was a bit cautious of our involvement at first, in an “I need to protect my son” kind of way. His family was always kind to me and made me part of all their family holidays and events, but there was always an underlying sense of caution there too. It was ultimately one of the reasons I left that relationship, as I worried about what would happen as time went on and whether I would truly have their support. As I mentioned in previous blog posts, my hubby, Bob was a whole different story. I told him the very first time we went to lunch that I had CF and he made it very clear that he didn’t care and that it was okay. Little did either of us know the ride we were in for. 🙂
Other people I’ve shared my CF with are my kids’ teachers. After a frantic phone call from Meghan’s kindergarten teacher saying that Meghan had shared in class that “Her Mommy squirts her with needles,” I decided I had better do a little disclosure to the kids’ teachers each year. Actually, I was squirting my saline up to get the air bubbles out before I flushed my IV lines, but sometimes I would squirt the extra water at little Meghan and she would laugh and laugh. When her teacher heard that version of the story, she laughed too and said, “Well you understand why I had to check in?” Yes, I certainly did. So each year at the beginning of the school year when the teachers send home those “Getting to Know You” worksheets, I always add a brief explanation of me having CF, how it impacts the kids and what they can expect during the year. I’ve found the teaching staff to be very appreciative and supportive of this kind of communication.
As far as the actual words I use to tell people I have CF, I’m pretty straightforward about it. “I have Cystic Fibrosis, are you familiar with that at all?” is usually a good start. Most times it’s “Yes, isn’t that a lung disease?” which then gives me the opportunity to explain more, if they’d like. When I get the “No’s,” I also ask if they want to hear more about it. Believe me, some people just don’t.
I guess my advice to CFers out there is to do what feels right to you. If you’re comfortable talking about your disease, great. Offer to educate people and let them know that CF doesn’t define you. If you’re uncomfortable talking about it and people want more info, you can always direct them to a reliable source of info, like the Cystic Fibrosis Foundation website. It’s your disease, it’s your life and it’s a place where you can gain back some control of how much or how little you want to share with others. For me, I like sharing. People have often surprised me with their tolerance and support. Education about the disease is key; so in my opinion, the more people we can get the word out to the better. If you have any questions, I’m all ears!