Twelve things you might not know about people with CF, but probably should

Posted by: 
Erin Evans

I should preface this post by saying that the list I’ve created does NOT pertain to everyone with CF. I’m hoping that there will be a few that others with CF can relate to, but of course all people with (or without) CF are different, so this is just a list I created from things I’ve noticed in my own life and seem like common threads among all of us with CF. I’ve read through close to 1,000 CFLF grant applications from people with CF who’s personal essays I’ve often thought, “Yes, that’s how I feel too.”  Or, “Yes, the same thing happened to me.” Anyway, with that, my own experiences, and the last year of reading everyone's blog posts (our blog officially turned 1 a few weeks ago!) I came up with this list.

(Oh, and all of the pictures, other than the ones of me and my family, are past or current, grant recipients, if you hover over their photo it'll tell you who they are.)

 

1. We’re stronger than we look. Okay some of us are lucky enough to look noticeably strong, but the strength I’m talking about is more of a mental strength. We take that strength and somehow transform it into superhuman physical strength. It’s like when you hear about a person who come upon an accident where a car has flipped over and there are people inside and without even thinking that person is somehow able to lift the car up off the ground to get the people out. It doesn’t make logical sense in the least, but they pulled this strength from some where with in them and did what they had to do. Sometimes CF feels like having to lift that car up, over and over again. It doesn’t make sense, but somehow we do it.

2. We hate wasting time. Time is very important to us and wasting time is the worst. Imagine being told at a young age that you most likely won’t live past 14. Then making it to 14 and having someone tell you that you won’t live past 25. This makes a person feel like they’re in a race with the clock. I’ve never known anyone with CF who is comfortable with letting time slip by without living in it completely, because really, CF or not, you never know what will happen in a day.

3. We think A LOT. We have a lot of downtime to think, like while we’re doing our treatments three times a day, or sitting in waiting rooms, or in the hospital, or standing in line at the pharmacy. We think and plan and make mental lists and worry and wonder and then think about how much we’re thinking. It never ends.

4. We don’t want you to be our hero and we don’t need to be saved. We just want you to sit with us and play cards when we’re getting IV antibiotics, or go for walks with us when we’re feeling awful and have to go really slow, or wait for us to finish our treatments before starting the movie. We just need you to be there and be kind and patient, that’s all.

5. We grow up a lot faster than our peers. From a very young age, like 5 or 6, I was responsible for taking my own pills, at school, around my friends, at sleepovers, whenever. Our health depends on us learning how to be independent and responsible by taking control over our own CF when we’re young. We also are just more sensitive to the world around us, we feel things and see things in a way that people without chronic illnesses might not. Most people with CF would agree that even when they were quite young they had a deeper understanding of life and death, and always felt older than their friends or classmates.

6. We feel sick a lot more than we look sick. Sometimes I forget what feeling “normal” or “healthy” feels like until I’ve felt it for a week or so. Then I realize just how sick I’d felt for the last days, or weeks, or months. Looking so “healthy” is sort of a gift and a curse for someone with CF. On the one hand it’s nice to be able to walk around without people staring at you, but on the other, people never really know that I’m feeling sick unless I tell them. And even if I’m feeling absolutely terrible they still seem to be in disbelief.  Believe me, we’re not faking it, we’ve been “sick” our whole lives and have mastered the art of looking good while doing it. 

7. Our family and friends are the most important things to us. I honestly can’t imagine not having the amazing family and friends that I have. Even though we’re the ones with CF and we have to deal with the daily ins and outs, having people in our lives who get it, and get us is so important. It’s really hard for us to ask for help when we’re so independent, but somehow when you really need them, they’re there, and you don’t even have to ask.

8. We hate it when we cough and strangers look at us like we’re gross/contagious/have the plague. Or when they feel it is their duty to comment on how sick we sound. I’ve been scorned so many times for coughing that I go out of my way to make sure I don’t even look at people when they cough around me. Or if I catch their eye I try to give them a smile and a look that says, “It’s okay, I get it.”

9. We’d so much rather be doing other things. I see this a lot in the essay responses in our grant applications, especially from the younger applicants. One of the hardest things about CF, isn’t the pills, or the colds, or the stomachaches, or the hospitalizations, it’s that they hate having to take time away from playing with friends to come in, sit down, and do their treatments. And adults, I’m sure would agree, that time spent alone, doing treatments, feeling sick, or being in the hospital is time that we wish we could be with our friends and family doing the things we love.

10. We love routines/schedules/plans/lists. When I was younger I was able to be more spontaneous, but now everything has to be planned out, thought through, and gone over twice. Our lives kind of depend on finding and maintaining a routine that works. Without it, we easily get sick. It’s hard to keep track of everything we have to do in a day to stay healthy. We spend at least half our day counting pills, counting carbs, scheduling in hours of treatments, making sure we have enough insulin and enzymes, going to doctor’s appointment, making sure all our prescriptions are filled, and then the other half is jam-packed with all that other stuff, like work, groceries, deciding what to have for dinner, laundry, exercise, seeing friends, cleaning the house, planning for the future, etc. It’s a lot to keep track of, so if you’re like me you have to write it all down.

11. Sometimes we just need to feel angry/sad/hopeless. We’re not mad at you, we just wish things were different.  Sometimes these feelings come out at the people that care the most about us, or the people taking care of us, like our doctors, nurses, or parents. Please don’t take it personally.  Sometimes it’s all just too overwhelming and we need to feel it for a little bit. We’ll come back around, and we’ll hope that you’re still there when we do.

12. We never give up. Even when it seems like we should, or it looks like we have.  We haven’t. So please don’t give up on us.

 

 

Erin Evans is a 31 year old living in Vermont with Cystic Fibrosis.  She has been the program coordinator for the Cystic Fibrosis Lifestyle Foundation since 2007. In her free time she likes to spend time with her friends and family, read, write, play softball, be outside, go swimming, and ride bikes.  She can be contacted at erin@CFLF.org.

 

DONATE NOW

 

Comments

As a male living with cystic fibrosis in his mid-twenties, I found this article to be pretty accurate. I have read a few other similar articles and thought to myself "there's no way most of these things are true" or "do you actually have the disease?" But I found your article to be spot on. I have never commented on something like this, but I just wanted to say good job and I appreciate your list.

Erin, I don't think someone has ever written something so poignant and relatable about people with CF. It truly hit me, thanks for sharing it. 

Yeap i always new this about you CF you do have to grow up really fast and that is why all of you have no patince at all, But most of all you CF have alot of smarts and a whole lot to offer this world just with your strength and you have a lot of love to give to this world. My son's cf taught me alot about people love and life and GOD

Erin, 

Thank you so much for sharing this list and your 'behind the scenes' crucial understanding of life with CF.  It is no surprise your amazing skill with words has gone a little viral here.  You are amazing!

 

Brian

I thought this article was very honest and real.  It is hard for the average person to understand what CF is and how hard it is for all age groups handle in everyday life.  So glad to see this done in a good down to earth way for everyone to understand how CF affects their daily lives, health and feelings.  Thank you.

 

Erin, you my dear nailed it!  I couldn't have summed it up better myself.  I am a Cystic Fibrosis adult at the age of 55.  I relate to all the points you have made, (I especially like #6 and #8).  All CF families and friends who know people who have CF should post this on their Facebook site.  It is an excellent way to get the message out.  Well done.

Oh, this totally made me cry! #4, 6, 7, 10= so true!!! I've applied twice & denied. I've been so sick lately, I could barely walk around the block because my lungs hurt so badly. Exercise is the best medicine.

We have an almost 6 year old with CF, many of your points I see already. And a few apply as being a parent of a kiddo with CF. Thank you for sharing! 

I love my grandson who has CF. I wish I could wave a majic wand and make it go away.  So far he has been healthy, meaning he has not had to be hospitalized.  He will be graduating from Kindergarten on Monday and I will be there,  He is my grandson, whom I "Love to the Moon and Back" a grandson, a grandchild, that I wasn't sure I woud ever have  Pray for a cure, understand him.

All 12 definitely apply to me and had to share this on my facebook wall and click the highlight button so even more people would notice! You're a great writer btw :) You explained what I've been trying to do in my own way for almost 29 years.

They are strong and incredible fighters who seem to complain way less than the average human.  They are shining examples of squeezing the most out of life that they can, no matter how awful they feel.

My neice Caitlin is 13 years old - weighs about 100 lbs and is

BY FAR the STRONGEST person I've ever met.. I LOVE YOU...

I could relate SO WELL to all but one of these! Thank you for posting. I'm about to do a podcast with Jerry Cahill and will be talking a lot about #6. 

I had to laugh when I read this!  As a person with CF I can identify with some of the things you list but not all - as you rightly point out might be the case for some people with CF!  Certainly true about the feeling unwell more often that we look.  I sometimes find that the hardest part about having a hidden (well for the most part!) condition like CF.  Sometimes people make assumptions based on how 'we' look and wrongly assume that if we look okay, then we must be.  Anyway, great blog/list.  By the way, I'm 52 years old with CF and still enjoying a good quality of life here in the UK.

Add new comment

Filtered HTML

  • Web page addresses and e-mail addresses turn into links automatically.
  • Allowed HTML tags: <a> <em> <strong> <cite> <blockquote> <code> <ul> <ol> <li> <dl> <dt> <dd> <p> <h3> <h4> <h5>
  • Lines and paragraphs break automatically.

Plain text

  • No HTML tags allowed.
  • Web page addresses and e-mail addresses turn into links automatically.
  • Lines and paragraphs break automatically.
Support CFLF