I have so many thoughts and feelings and things I want to share. But this one seems most important right now.
Most of you may not know this, but cystic fibrosis patients aren’t able to be around each other.
About 10 years ago, not long after I was diagnosed, the foundation discovered we could contaminate each other with very life-threatening bacteria. To prevent the spreading of these germs, an infection policy was put in place. The original guidelines stated that CF patients could not be within three feet of each other. Whenever I attended CF Foundation sponsored events, I was given something to wear – like a red carnation, a ribbon, etc. – to signify I had CF, that way us CF’ers could steer clear of one another.
Recently, researchers discovered that there are even more scary bacteria than they originally thought – and they’re even more contagious. So the regulations were amended to reflect the severity of these new discoveries. Now, instead of three feet, we’ve been instructed to keep six feet apart. And at any indoor CF Foundation-sponsored event there is to be only one CF patient present.
For a disease that is already isolating, these changes were hard to swallow.
Had I been diagnosed in infancy, I probably would have spent my childhood at camps and support groups for CF patients, forming lifelong friendships with kids that understood just what I was going through. But because of my late diagnosis (both a blessing and a curse), I’ve only known the world in which we can’t be near each other.
This means I’ve never met another CF patient face to face; I’ve never given someone else with CF a hug; I’ve never visited a CF friend in the hospital.
It’s made things quite lonely.
My husband, family, and friends do all they can to listen and give advice, but they know it’s not the same as if it came from someone who knew exactly what I was feeling.
This time of transition is proving to be especially difficult for me.
Most of the time I try to put on a brave face. I have CF and, until a cure is found, there isn’t any changing that. So what’s the point in wallowing in what sucks about living with this disease?
But right now? I’m aching for someone who knows how hard it is to make big life decisions when you don’t know what your future holds – or if you have a future at all.
Right now, the average life expectancy for a person with CF is 37. This year I turn 29.
I don’t want to limit my life because I have CF, but I also don’t want to waste it.
When it comes to my professional life I’m torn. I don’t want to spend my healthy years working toward a career I won’t ultimately be here to see. But I don’t want to throw in the towel and give up on pursuing what I love. (Not to mention the fact that we’re not in the financial position for me to stop working altogether.)
My personal life brings its own struggles. I feel myself pulling away from friends because I feel so different than them. It’s hard to watch the people you love do things you aren’t sure you’ll ever get the chance to experience. I desperately want to be happy for them, to share in their joy. But I also feel this deep sadness for myself and what I might not get to do.
But I don’t want to make them feel bad. I don’t want to take away from their happiness.
So, not knowing what else to do, I end up keeping to myself.
It’s times like this that having coffee with another CF patient would help. Being able to talk to someone who’s been there – who understands what I’m feeling – would make a big difference. It would give me an outlet. Somewhere to turn other than keeping everything inside.
Instead I feel frozen. Unable to make a decision. Unable to explain how I’m feeling.
It can be hard to ask for help. To admit you aren’t doing as well as it may seem. In a society that views vulnerability as weakness, admitting to feeling scared and unsure is damn near impossible.
This is the one space I have to share what it’s truly like to have CF. To share the emotional toll cystic fibrosis can take. To let go of some of what I keep bottled up. And to hope that someone else reads this and can help in some way, however small.
It’s also a way to reach each out to those in a similar place. Those who also feel alone. Those who don’t think anyone understands.
Because CF or no CF, we all have our own stories and our own struggles. And ultimately we all just want to be heard.
From A to Pink | A Blog by Katharine Scrivener 