Disease Fatigue Is Not the Same as Laziness

Brad Dell avatar

by Brad Dell |

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(Photo by Joshua Stephens)

I come from the generation of “Netflix and chill,” except for me, it wasn’t a sexual innuendo. My college life consisted mostly of watching Netflix and chilling; sitting on the couch with my girlfriend at the time, and binge-watching TV shows. I was known for being a successful couch potato, which basically meant I put loads of effort into schoolwork and work-work, but didn’t exercise much outside of walking between class buildings and my workplace.

I lived in Hawaii, yet went on maybe one hike per year and rarely hit the beach. A wonderful org called Mauli Ola Foundation has celebrity surfers like Kelly Slater and Sunny Garcia take CFers surfing (salt water vapor is good for lung health), and I’d feel stoked to hit loads more waves after each event attended. Fatigue would fade the amp days later.

My “laziness” was a joke among friends. But I didn’t laugh. I felt rude when I could only help minimally to set up and take down for church events. I didn’t feel manly standing on sidelines as other dudes played sports and valued each other by physical ability. I loathed feeling as though someone was choking me, stabbing a knife into my ribs, and blazing a blowtorch in my face when I exercised.

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Exercise is one of the best CF treatments. But if you mistakenly begin exercise regimens later in life, when your lungs are crippled and muscles atrophied, it’s awfully hard. People complain about the pain of starting exercise programs or working out with a cold. Imagine how much harder it must be for someone with half or less of your lung function, plus multiple ongoing infections. Don’t pretend it’s as easy for a CFer to exercise as it is for a relatively healthy person.

Walking one mile on flat ground, with numerous breaks, was a monumental achievement in 2016. (Photo by Kristina Kornegay)

In my last year of college, fatigue wrecked me. The Sandman slammed me into the ground with a sledgehammer, then screamed at me to stay down. I couldn’t keep my darned eyes open. I’d fall asleep in class, and wake up with a small shout (a sleep apnea symptom). My classmates would snicker as I stared intently at my desk and begged my mind to reactivate. I’d drift seconds later — sandbags dragging my eyelids. I was sleeping about 18 hours a day.

Lead and wool wrapped my limbs. I’d overheat while walking between classes; salty, stingy sweat flooding my eyes. In 10 seconds, my heart rate would shoot to 164 beats per minute while slowly walking on flat ground. I foolishly began drinking coffee, and lots of it. Nothing grazed my fatigue. I’d doze off in the library, forehead pressed to my keyboard, while working on my thesis.

(Photo by Shelby Dell)

I was in end-stage CF, dying, and people commented on my laziness. Many CFers kick things into gear and get really fit in end-stage CF, even knocking themselves off the transplant waitlist. They’re supernaturally determined. I lacked that.

During my transplant evaluation, a social worker asked about my goals. I said transplant wouldn’t be a life extension, but a reset button. I wanted to be athletic; to run and mountain bike. Mom cried, saying she didn’t know I wanted those things. I’d always wanted those things. I was just afraid to fail and hurt.

(Photo by Lisa Dell)

Post-transplant, I couldn’t stop vomiting and my body swelled so much from fluid retention that I looked like the Michelin Man and couldn’t fit into any shoes in the dead of winter. I simply couldn’t exercise. I thought I failed my family, my doctors, my donor, myself. Maybe I really am lazy?

But things changed. I adjusted to pulmonary rehab and progressively pushed harder. My transplant incisions felt like they were tearing, my shoulders burned, my legs cramped. It hurt so good. My muscles began giving out before my lungs. Eventually, my muscles stopped giving out, too. I began thriving. I now know I wasn’t lazy all that time. Fatigue had me in a death grip.

I never stop moving now. I’m traveling all over the world. I climb, run, play badminton, do yoga. My daily step average in July 2016 was 67 steps per day. I now have a 14,000-step average, and hiked over 33,105 (13.5 miles) in Zion National Park, in 104-degree weather at 6,521-foot elevation in a desert. I climbed 68 floors that day. The same week, I got medals at the Transplant Games of America for badminton.

(Photo by Kathleen Sheffer)

The absurd thing? I wasn’t even a tenth as tired that week as I was when I’d walk across my living room before my transplant. That’s how bad CF fatigue can get. My days chained to my bed are over.

If you’re a caregiver, your loved one may suffer from fatigue. Don’t assume they’re lazy. Encourage them to exercise, but don’t attack them. They’re hurting.

I travel to Hawaii this December for the first time since my transplant. I’m excited to appreciate the hikes I neglected and surf again.


Note: Cystic Fibrosis News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Cystic Fibrosis News Today, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to cystic fibrosis.



Kitty Bartlett avatar

Kitty Bartlett

Brad, I am so thrilled for you! I don't have CF but I have COPD and I'm doing well (I am ***old***) but you are young and deserve to have to have a long, healthy life! You sound like Superman! Keep on living well and being healthy, sending you my very best wishes for wonderful health.

Brad Dell avatar

Brad Dell

Thank you so much, Kitty! That's all incredibly kind of you to say. I hope you're able to harness Superman-like strength to beat back COPD! Best wishes for you <3

Aly Babson avatar

Aly Babson

You're in inspiration! My daughter is 18 with CF and has experienced declining health/lung function for the past year. We've noticed extreme fatigue and will keep your thoughts in mind as we gently suggest exercise. So tough when something so helpful is so, so hard. So glad to hear your wonderful happy turn around story! Stay Strong!
~Aly Babson

Brad Dell avatar

Brad Dell

Thank you so much, Aly! I'm sorry to hear your daughter is going through a decline. Fingers crossed that she'll have a turnaround, too! There are some incredible therapies on the horizon -- hold tight!

Rod Spadinger avatar

Rod Spadinger

This is a great article, Brad. Thank you for sharing your experience with the world. You are serving a grand purpose for our community.

James Stephenson avatar

James Stephenson

Thankyou Brad for this brilliant article. I just wish the british Department for work and pensions would take note when we have our benefits taken from us (pip etc)

33 CF

Gina avatar


Hard to explain and not saying I can state anything factual pertaining to others with lung ailments, but know first hand from researching and experiencing sulfite sensitivity, allergies to such which can cause anaphlaxis. Sulfites cause inflammation and are in alot of foods, spices, flour, white bread, noodles, as well as other foods very high in them. Simple spaghetti sauce, lizza sauce, etc. There really aren't tests for such unless you become aware of such and have such done in the drs office, as far as I've gathered from research and consults. Some inhalers, etc. also contain them, such as the flovent hfa, which goes directly to your lungs and causes more harm than good if you have such sensitivity or allergic reactions. CBD oil is another thing that is supposed to be good for inflammation, which does come in thc free form too for those open to trying such. I haven't tried it myself, but do know of others that do and swear by it. Purity of such is a must supposedly, as theres the imitations out there. Just throwing this out there, as it gets to the point where you feel it doesn't hurt to try something. I'm not one to preach, but it really does help if you have the sensitivity or allergies. Give it a whirl and draw your own conclusions. Stay strong! Hope it helps. 💕💕👊

Ali avatar


What an inspiring story. I'm so glad to hear that your lung transplant went so well and that you are achieving so much! It is hard when people just don't get how exhausting it is to have CF. I'm an older person (55!) with a decent lung function but I get soooo fatigued and wonder what the hell is wrong with me (I have CF!)a. I watch with wonder as able bodied people (even a cancer survivor) can walk a marathon within 12 hours. Diagnosed later in life, I am still coming to terms with this horrific disease. I wish you all the best and hope trikafta etc can help you maintain good lung health
Sending you strength and love


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