Taking a break from all of the food posts today, to get a little raw and real with all of you.
I’m not sure why, but it seems like recently CF’ers being around other CF’ers has hit a bit of buzz. In recent years, it’s a topic that has made appearances on shows like Grey’s Anatomy and Red Band Society, along with others, I’m sure, but no one really noticed then. Perhaps it’s the social media outbreak and hype over a child being removed from a classroom where there was another child with CF.
Whatever the reason for the recent worldly revelations, it stunned a lot of friends and family to learn that this was a truth in my life: People with Cystic Fibrosis really can’t and shouldn’t be around other people with Cystic Fibrosis. (unless you are in the same family, because you build immunity to each other). Long story short, we have specific bacteria and infections that are incredibly harmful to each other. In some cases, being together could be deadly. It’s a hard reality that is heavy on my heart lately.
The magnitude and weight of that reality didn’t hit me when I was diagnosed- at 16, a fresh diagnosis wasn’t something I wanted to discuss with anyone, let alone friends or someone that had the same thing as me. I guess the mindset at the time was more of a ‘if I ignore this, and don’t mention it, I can pretend to be normal.” After all, isn’t that what every teenager craves? To just blend in and be normal? And besides, I felt that I had plenty of supportive people in my life already.
It wasn’t until my adulthood that I really felt the weight of it. I often found myself searching for someone like myself- someone that really ‘got it’ because as much as you try to explain the dark days, fears, and doubts to the people in your life that know you- no one can really truly know.. unless you’re experiencing it, too. I needed women in my life that had my fears and my struggles, and more than anything, I needed someone who had once stood in these deep, vast waters and had made it to the other side.
I needed clarity, and I needed hope, and so the internet became my salvation. Through social media, blogs, and forums, I’ve made acquaintances that continue to grow into amazing friendships. We cheer each other on, we support each other…and most of all, we get it. These strangers know me better than some of the dearest people in my life.
And here’s where that gets hard- I’ll quite possibly never meet the beautiful souls that touch my heart and get me through some of my hardest moments. We can’t chat about life over a glass of wine, or go check out the latest flick that we’ll (inevitably) cough through. I can’t be that shoulder to cry on, even though it’s not that far of a drive. I’ll never meet the young mom with CF whose blog inspired me to keep holding on to hope.
They don’t tell you that part about CF. They don’t mention that with your diagnosis comes a painful loneliness; that your greatest support system can be your greatest downfall if you were to exist together.
Some day soon, I know we’re going to cure this thing, and when we do, I’m having a huge party for all of us.
Until then, I’m hugging you from here.