What does CF "really look like?"

So it's Cystic Fibrosis Awareness Month and that means that Facebook and many other social media outlets are exploding with posts about CF. What it is, what it means, who has it, why we need funding. I personally have zero problem with talking about my cystic fibrosis for the rest of the months, but it is encouraging to see the community come together every year to bring much needed attention to this illness that affects us so deeply. I've noticed, however, a few posts, discussions and dare I say arguments about "what CF really looks like" and that it's not glamorous or pretty. I've seen this recently and on a number of occasions in the past.

Some think that the best way to bring awareness to is to show the graphic photos. Photos that bare witness to our most fragile state. Photos inside the hospital walls because most people will never have the chance to see something that raw. Others, take a different approach. They aren't as comfortable sharing that vulnerable side of their disease and they would rather post a picture where they look healthier, maybe with their make up and hair done or even a fun snapchat filter. Or maybe they don't want to be labeled as "sick" and they'd rather share the "normal", non-CF side of their lives as a way of showing the world that they're just like everyone else.

Well I, being who I am, have a few thoughts.

I don't disagree with either approach and I can definitely see both sides because 1) there isn't one way that CF "really looks." There's 70,000 different ways it looks because there's 70,000 different people in this world living with it. And 2) Because of photos like this one, which actually shows three different pictures, taken less than 10 hours apart.

A few months ago, I went to a luncheon and was recognized by the Virginia Chapter of CFF with their annual CF Star award. An accolade given to one individual with CF in the state for their volunteering, advocacy and fundraising efforts. This was a huge honor and I enjoyed the opportunity to get up in front the crowd, pose for some photos and accept my award. I smiled and enjoyed the moment.

Immediately after, I took myself to the emergency room. I had been sick on and off for almost a month and was finally ready to waive my white flag. I started to feel really sick the night before and was experiencing severe asthma symptoms but I managed to keep it under control enough to still make the annual awards luncheon. It was Friday afternoon and I wouldn't make it back before clinic closed, so my doctor told me to just go to the ER and he'd meet there to do an exam and get me started on IV antibiotics. I felt pretty awful, but still had my make up done and yeah, I took a cute snapchat selfie in my hospital gown.

After about six hours in the ER, I finally got a room on the ward. By then, I was rapidly spiraling downhill. I was 1000% past the point of pure exhaustion. I had a fever, I was on 4 liters of oxygen and my entire body was throbbing in pain. I had been poked and prodded, examined by half a dozen doctors and told just as many nurses what my symptoms were and why I was willingly admitting myself to the hospital on a Friday afternoon. My asthma was still flaring up to the point that I had to take a breathing treatment every 2 hours or I would have a massive coughing fit/asthma attack. It wasn't the sickest I had ever been, but it was definitely a top contender. Which made sense because as it turns out, in addition to asthma issue, I had the flu, pneumonia and had colonized MRSA for the first time in a year. Thanks Murphy's Law? 

These three photos show the reality of my cystic fibrosis, both the high and the low, pretty and not so pretty. They show how quickly things can change. And how that when you have CF, or any chronic illness, every day is filled with choices and is a constant balancing act between your life and your passions, and your illness and your fears. 

At the time, I shared this photo to my Facebook. If I had posted any three of the photos by themselves, I'm sure I would've gotten a couple dozens likes and a few comments. But together, I had close to 300 people stop, take the time to read my post and learn about cystic fibrosis. 300 people learn about what I was going through and what this illness does to so many every single day. They learned that it's relentless and doesn't give a damn what's on your schedule for the day. That it comes in and can turn the most beautiful, happy, normal day into one full of pain, fear and sadness. One that feels like prison. Then, the next day, or next week, or even next month, when you finally get your footing and find your strength, you straighten up your shoulders and go back out there like nothing was ever wrong. Because you're sick of that prison and more than ready to enjoy your beautiful, happy, normal life again.

I don't think there's a wrong way to show what cystic fibrosis looks like. But I do think it's the combination of showing both your vulnerability and your happiness that best represents the battle that rages inside the hearts, minds and certainly bodies of those 70,000 people. No, CF isn't pretty. But living, truly living, despite the chaos that goes on inside is beautiful. And it should be celebrated.

For me, showing both sides of the story is what really tells the story of cystic fibrosis. It's what really tells my story. The fact that I can go from standing in front of a crowd, posing for a photo, to sitting in an ER, still looking cute and having fun with snapchat, to barely being able to keep my eyes open and struggling to take even one more breath without pain shooting through my entire body, in just ten hours is what makes you stop and pay attention. It's what cystic fibrosis looks like to me. It may not look like that to my friends. It may look better and it may look worse. And that's okay.

So I guess my point is... Share the cute snapchat you took while you had your vest on. Share the picture of yourself at the pool even though your gtube is showing. And yes, share the picture of you unconscious in a hospital bed, with half a dozen tubes and wires attached to your body. Just share your story. And don't judge someone else for sharing their story differently. Because at the end of the day, does it really matter how someone was told about cystic fibrosis? No. It only matters that they listened. So let's give them something to listen to.

Happy Cystic Fibrosis Awareness Month.