Most days I manage to forget about having cystic fibrosis. It’s not something I can totally ignore (for one thing, my daily treatments are a constant reminder) but I can usually go through the day feeling like a normal 26 year old.
Yesterday wasn’t one of those days.
You see, on Saturday I came down with a cold. It started with a sore throat, sneezing, watery eyes, you know the deal. And by yesterday it had moved into my chest. Also typical.
Except for a person with CF, it sucks a little bit more.
As I’ve mentioned before, because my body doesn’t process chloride correctly, my mucus is thick and sticky. My daily treatments help me get rid of the gunk in my lungs, otherwise it can trap bacteria and cause dangerous, damaging infections.
It also makes my normal cough much worse, much more productive, and generally more exhausting.
After a full day of hacking away I had a meltdown.
It’s days like these that really get to me. As hard as I try to live my life with a positive attitude, sometimes the fears creep in. So I’m learning to let myself have my moments of “woe as me.”
I’ll be honest, I’m scared as hell. Days like yesterday remind me what this disease is doing to my body. And how quickly I can go from healthy to hospital.
I’m also angry. I honestly do believe things happen for a reason, that having CF is part of why I was put on this earth. But I still get mad. It still seems incredibly unfair. And that question still makes its way into my head: Why me?
But I’m not telling you this because I want pity.
One of the things I constantly battle with, especially recently, is how little people see in terms of what living with cystic fibrosis is like.
I look normal, I sound normal (minus that pesky cough), I act normal. And because of that it’s hard to understand how serious this disease is.
There are only a handful of people who see what I go through on a daily basis. And even fewer are around when I’m having a day like yesterday.
It can be frustrating. And again, not because I want people to feel sorry for me, I just want people to understand what it’s like to live with this disease. Having CF is part of who I am. It doesn’t define me, but by appreciating what having CF is like, you understand me better. And isn’t that what everyone wants, to be understood?
That’s why I started a group in college. That’s why I started this blog. To raise awareness.
I can’t say it enough: The more you understand a disease, and the people affected by it, the more inclined you are to help.
Which is why I want to talk about the days when I don’t feel strong, when doubt creeps in, when the tears come. It’s an important part of what having cystic fibrosis means.
So last night I cried. I spoke about the things I normally keep tight inside. Things like death, loss of lung function, the frightening what ifs. And then I made a plan. I reminded myself of the developments being made with new drugs, and hopefully a cure. And I decided to make tomorrow a better day.