Posts
Question from reader
I love when I get questions from the community and
I always hope that my answer can help more than just the person asking the
question. We all seem to undergo similar experiences in this life and I figure
it can never hurt to share my own personal life experiences.
Question:
I am meeting lots of
new people who don't know anything about CF, or what that means in my daily
life. I am very comfortable talking about what CF is and how it effects me, but
I don't know how honest to be, and how best to explain it to people who don't
know me well. To look at me you would never know (unless you saw me sick) that
there is something "wrong" with me, so I find when I try to explain
it, it's almost as if people don't quite believe me, or think I'm being overly
dramatic about the time I put into breathing treatments, or how sick I can get.
I don't know how to explain to my jogging buddy that I ran 2 miles with at
6:00am (feeling junky but not too bad) that by 9:00pm that same day, I was
coughing up blood and had a fever of 104. I don't know what to say to a new
mommy friend that I canceled a playdate with on Monday because I wasn't feeling
well, that by Wednesday I had a PICC in and am now doing a full course of IV
antibiotics. She, being a kind person, texted today (Friday) to see if I'm
feeling all better, and the truthful answer is no. No I don't feel better, I
actually feel worse. I can barely carry my baby up the stairs because it's that
hard to breath. I'm exhausted because I've spent 2 whole days in and out of the
hospital and hours in waiting rooms. But saying things like that freaks people
out, and then they don't know what to say. However, pretending things are fine
when they aren't isn't exactly a good option either for any kind of lasting
friendship.
So how do you handle
it? Where is the sweet spot between complete honesty, and pat answers like,
"I'm getting better!"?
Answer:
The answer to your
question is a tough one (as if you didn't already know that).
For me, I've rarely
been totally flat out about how I feel with my friends and family. If I were to
say "not great" or "pretty bad" I would always follow it up
with "but I'll be alright" or "I just have to keep
pushing". I've never wanted to put an unneeded burden on someone who really
can't do anything to make me feel better. Sure they care, but they can't
actually heal my lungs, do my medication for me or take my place in the
hospital. I'm the only one that can do those things, so I've always
internalized a lot of those different "I feel like crap" feelings.
In times that I feel
helpless, I don't want to cause those around me to feel helpless as well.
Even with my now
wife, I was very honest about what CF was, how it affects my body and what it
could all potentially look like in the future, but I always quickly followed that
up by, "but I'll work hard to make sure I'm always living the
dream!".
Think about this too,
will anybody around you ever really "get it" no matter what you say
or how you say it? Probably not. The only people that could get it are others
with CF or maybe other chronic illnesses. For me, I'd rather others in my life
see me for my perseverance, positive attitude and faith in Jesus - than for
something they will never be able to truly grasp.
Response:
Thanks so much for
getting back to me so quickly! That does help, and I think you are absolutely
right. Thank you for affirming that for me, and for the encouragement to be
positive. I am generally a very positive person, but this go 'round has been a
little rough. I know you are right and so I will keep on, keeping on!
If, as a reader, you ever have a question for me,
please never hesitate to send it along. You can send it via CysticLife,
Facebook or my email address (ronnie@cysticlife.org)!
