I have a love-hate relationship with social media. It showcases the best and worst of humanity and everything in between. But, for those of us living with CF, it's often the only way we have to connect with each other.

Gone are the days of hospital hangouts, support groups, CF camps, etc., because of infection prevention. So, social media provides one of the only spaces for us to gather as a community. It can be an incredibly useful tool to bounce thoughts off one another, seek encouragement, celebrate our successes, or simply vent.

The best uses of social media happen when we connect, support, and inspire one another. The worst uses happen when we cut down our fellow comrades who are just doing the best they can or put others down for having a differing mentality. Our words have power and we should be thoughtful about how we use them. It's been helpful to be selective with the social media groups I join and to adhere to the old adage: if you don't have anything nice to say, don't say anything at all.

There's also a unique byproduct of CF and social media: death and transplant. Even if you've limited how many people with CF you follow, chances are you'll still catch wind of someone who has passed too soon or find out about something that can go wrong after a transplant that had never crossed your mind.

I've worked very hard to live in the moment and not let fears of the future steal my Zen today. It's not that I block out the fear, it's always there. It's just easier for me to place those feelings in a folder of sorts and file it in the back of my mind so I can keep movin' and focus on what is instead of what-ifs.

However, when the CF community loses one of its own, that file gets plopped right on the front desk of my mind. Whether I know the person or not, my heart breaks and tears fall.

I cry for the opportunities they'll never have.

I cry for the pain I know their families are experiencing.

I cry for the pain my family may one day have to endure.

And I cry for the beautiful life I will have to leave behind someday, despite doing everything in my power to stay healthy.

I don't know what the solution is or if there even is one. In the past, I've tried distancing myself from the CF community as a way to limit that sadness. But, the truth is, I've made some incredibly meaningful connections online and I am thankful for the camaraderie I've found.

What has helped me is to vent some of my fears to my therapist. I find I have to allow myself to feel something before I can move past it, and therapy has helped me to do that. Ain't no shame in my game and it does not make me weaker or any less of a positive person for doing so.

At the end of the day, we're in this together. Just because someone may have a different approach or experience with CF, it doesn't make their story any less valid. There's room for all of us. And to those who happen to be facing challenging times, we're here for you.

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