Staying alive is hard work, and my
body sucks at it. There are a lot of things I wish people knew about living
with Cystic Fibrosis, but they take time to explain and sometimes it’s
difficult. I’ve been asked a lot of questions but many of them force me to
evaluate my whole life and coming up with a quick answer is just not possible.
The #1 question I get asked the most is “does it hurt when you breathe?” There
is no easy answer for this and it always makes me feel put on the spot. Half
the time my answer comes out as something like, "... I don’t know I haven’t
really thought about it, not today I guess”. There are days when it really does
hurt to breathe, but I feel like the pain I experience isn’t what people
envision. Most of the time the pain comes from the muscles in my rib cage, like
9 times out of 10 that’s where my pain (personally) lies.
Anyway that’s beside the point.
There are real things I wish people knew about my life with the disease, so I
am going to create a hopefully ongoing segment recording them, for now I have
the first 5. These will range from very broad things to very specific things, I
hope you find this informative and helpful.
5 things I wish people knew about my life with Cystic Fibrosis:
1.
My body is literally starving itself. My
pancreas doesn’t work properly so my body doesn’t absorb the nutrients in food
when I eat. I am dependent on pills before each meal or snack to give my body
the enzymes that my pancreas would produce normally, but those pills still aren’t
enough. On top of the pills I require a handful of vitamins. It gets
frustrating when people remind me how lucky I am to be skinny without having to
“work” for it. I may not have to work out or exercise to keep my slim figure,
but make no mistake I suffer for it. Every day is a fight to gain weight and
stay healthy and my body fights me every step of the way.
I am on a diet of like 6,000
calories a day, but that doesn’t mean they can be unhealthy calories. It gets
even more difficult when I am having a flare up because I often have zero appetite
and have to force myself to eat. This is a common problem for people with CF,
many will have feeding tubes placed so they can gain the weight they need.
2.
Even the most subtle changes in the air can make
it difficult to breathe. My body is able to adjust to temperature and humidity
fairly well, but that adjustment takes time. I really don’t know how to explain
this so an averagely healthy person could understand it, so I’m going to try
and describe my experience with what I’m talking about.
When I leave my warm and cozy house
in the winter just to walk to the car that blast of cold air will take my
breath away, which I think is something a lot of people experience but having
CF it takes several minutes to catch my breath again. If you add in the fact
that I have to keep moving to the vehicle it’s an extra strain on my lungs and
heart. Now if the car is already preheated I have to go through this process
all over again because that nice warm air is like a second shock to my lungs
even though they probably still aren’t used to the cold. There are somedays
where it will take over 15 minutes for me to calm myself down after getting in
the car.That is a case of an extreme temperature change but I can have the exact same reaction just walking down the frozen aisle at the grocery store, or walking from room to room when the air conditioning doesn’t circulate evenly. I can feel even the smallest differences in humidity and temperature and they all force my body to adjust to them.
3.
Showing an interest in my well-being makes you
the coolest person in the world. I went nearly two decades without having
friends that showed any inkling of interest in my health or than wishing me
better. It wasn’t until college I experienced my first set of friends who went
out of their way to educate themselves on the disease, and that meant the world
to me.
4.
Getting better really just means feeling less
sick. Having a flare up and ending up in the hospital is what I call getting
sick, so when I come home people are expecting me to be “better”, which I am
normally feeling better, but people often confuse that with being healthy. I am
unfortunately no healthier now than I was before my last admission, tragically
the nature of Cystic Fibrosis means that I may even be in worse shape.
5.
And maybe the most important point of all, sick
people are allowed to be happy. I will say this millions of times because there
seems to be some kind of stigma that sick or disabled people must be miserable
and unhappy when it’s just not the case. People with disabilities can smile,
and laugh. The phrase “but you don’t look sick” can be so well intended but it’s
a really ignorant thing to BELIEVE. People will say it in some cases trying to
make someone feel better about themselves and it can come from a good hearted
place but it’s really damaging at times. When you tell someone they don’t look
sick you’re practically telling them they’re lying about their health condition.
So just remember there is a very small correlation between my health and my
happiness and if I physically represent my health I’d probably hardly look
better than a corpse.
Thank you for reading through my
list. These aren’t listed in any number of importance, and some of them are
just the frustrations from things I experience. It’s my hope that if people can
understand some of the invisible thoughtless struggles I experience day to day
they will realize how important it is to make CF stand for Cure Found.
