When I began blogging, I also began seeking out fellow cysters (CF women) to talk to, ask questions to, and just to have someone to relate to. Over the last few months, I’ve discovered that a CF woman is, in general, a totally different kind of woman. I’m not saying that we are better or worse than the normal woman, but I am saying that we are totally different. Let me explain (I will refer to CF women collectively as “we” for the remainder of the blog):
We have, in general, managed to find the really good guys to marry. I have read through stories, blog posts, or individual conversations about many of the husbands of CFers. I have found that they are, more often than not, really special, caring, genuinely nice, and dedicated husbands. In addition to this, many of us are married by our early twenties and already looking to start a family. I think this deals with the fact that we are forced to grow up earlier.
We tend to be, on the whole, really happy people. The vast majority of us don’t sit and complain about having CF. We might have a day or two of moaning to each other about it, but then we get over it and move on. We tend to be really optimistic and supportive of each other. We tend to share ways that we are seizing life’s golden opportunities. We truly love to hear when a fellow cyster’s lung function is up or that she manages to get pregnant. We root for each other when we’re in the hospital. And this is all within our group. Outside of it, we tend to live for the moment. We often realize the blessings we have and we enjoy them as fully as possible!
We understand just how necessary patience is. With the groundbreaking FDA approval of Kalydeco, I was reminded of just how true this statement is. We wait years to get a medicine which will help improve our lung function or quality of lives. We wait hours each time we have CF clinic days. We often wait months to years for a transplant when we have to have one. We also often wait years to get pregnant. Many CFers have fertility issues which makes getting pregnant very difficult. And, most importantly, we are still waiting for a cure. If we didn’t have patience, we wouldn’t make it through.
We are no strangers to hospitals. Whether it’s due to the clinic appointments every 3 months, numerous blood draws, additional doctor appointments (for example, I have had or still have to visit an ENT, endocrinologist, cardiologist, geneticist, and liver specialist), or the unfortunate but necessary hospital stays, we have all seen our fair share of hospitals. I personally visit the University of Chicago, and I have now officially been to every single floor of that building to see a different doctor! I probably know that hospital better than some interns!
We have thought about our mortality, usually extensively. This just goes with the territory when you have CF. Having a disease where the average life expectancy is only 38, means that you think about death a lot. We wonder which cold we won’t be able to bounce back from, when we’ll have to have a transplant, when we will become resistant to all current antibiotics, and more morbid topics that I won’t go into. That said, we often tend to focus on our mortality a bit too much. I remember being sure I was going to die early, but then asked my doctors who in turn said not to worry about my life expectancy so much. They told me I was healthy, compliant, and positive. Those three things will take me far.
And the final way (though I am sure there are many other ways) we are different is . . . .
We talk about anything and everything without getting grossed out. Now, don’t get me wrong. I have female friends and we talk about a lot of stuff, but my cysters and I just take it to the next level. So what do we talk about that normal women either have no reason to talk about or are too embarrassed to talk about? Mucus? Yep! Blood? Yep! Comparing scars and surgical procedures? Yep! Boogers? Yep! Ovulation? Yep! Life expectancy? Yep! Bathroom issues? Yep! With all of those topics on the table, we even share embarrassing stories which usually entail one of the above topics, if not more than one!
So overall, I have to say that CF women are different, but it’s certainly not a bad thing.