I was putting away the dishes after dinner when I paused, exhaled, and said to my husband, “Whew. I just got a major wave of fatigue.” He said, “Yeah, I feel tired right now, too.” This isn’t the first time a healthy, able-bodied person has responded this way—and I know everyone with a chronic illness can relate. I kind of laughed and tried to explain why chronic illness fatigue wasn’t the same as feeling tired, but I was coming up short for words and having difficulty explaining the difference. My husband, Bobby, genuinely wanted to know why I thought my fatigue was different than his and how I knew it was. I said I used to be healthy. I used to not have a chronic illness. I know what tired felt like then and what fatigue feels like now.
Articulating pain with IBD and fatigue can be so challenging—even though it’s something that is so much a part of our day-to-day experience. Unless you live it and it’s your reality, it’s difficult to put the experience into words.
I called upon the IBD family on Twitter and Instagram to see how they describe their own personal fatigue. Here are some of the responses:
“Imagine your car being on empty and you put $5 worth of gas in the tank until you’re running on fumes. Then you put $5 worth of gas again, and you continue this process for months at a time…while sometimes running out of gas completely multiple times along the way.”
“Having to run a consistent marathon without stopping while carrying a toddler in the front and a backpack with a week’s worth of supplies on your back…in flats.”
“Mentally feeling like you have the energy to do simple tasks, but your body physically won’t let you. Knowing I need to walk 100 feet to get in my work building and having to give myself a pep talk to do it because I’m not sure I’ll make it without having to sit down.”
“You’re tired from being tired. You are just over everything and the day drags on and on. A nap doesn’t help because you “waste” your day, but the truth is you can’t even take a shower because the thought is way too much energy.”
“Like you’re walking with ankle and wrist weights on 24/7. There are days I feel like I’m walking through a fog so dense in my head I can touch it.”
“When I think of chronic fatigue for me it means faking being well. When getting out of bed or getting a shower is an accomplishment or needing to rest after taking a shower. No matter how much sleep you get you still wake up tired. Chronic illness fatigue is physical, mental, and emotional exhaustion.”
“Trying to motivate yourself when you’re fatigued and having brain fog is how I imagine swimming in syrup or molasses would be.”
“It’s the feeling of exhaustion, hopelessness, and loss. You’re beaten down from managing your condition and the various negative side effects that come with it on top of trying to function in whatever role you’re trying to play on a daily basis (for me: wife, mother, employee, and friend). It’s trying to make the most out of life but knowing you’re limited. It’s mourning the person you once were and want to be at that time. It’s physically, mentally, and emotionally draining.”
“I explained the fatigue to my students that just thinking about lifting my legs to walk or the mechanics of moving my limbs is exhausting…let alone the act of doing it. Everything feels heavy.”
“Down to the bone, exhaustion in my core, something that is impossible to push through.”
“I like it’s like first trimester fatigue! But, with no end in sight and nothing hopeful to show for the symptoms like a baby!”
“Like your body is made of bricks. Your mind knows you need to get up and do something—change over the laundry, send an email, but your mind cannot make your body move.”
“Living in a constant state of exhaustion. No amount of sleep or rest seems to shake it.”
“For me…I would describe chronic illness fatigue as KNOWING your car has no more fuel and having to get out and push it home yourself.”
“Heaviness in my body. Just surviving, not thriving. Frustrating because I want to do more things but can’t always.”
“Being tired as soon as you wake up, until you go to bed. Never fully feeling rested. Planning naps throughout a day. Heavy eyes. Mood swing when beyond exhausted.”
“Like constantly living under 10x gravity.”
“Like someone pulled the plug out.”
“Like moving through the mud. It can also creep up on you when you least expect it, sort of like this year’s global pandemic—all encompassing and has no sympathy.”
“Like I’m wearing 100 pounds worth of sandbags that don’t go away even when I get lots of sleep.”
“Waking up and still being tired. No amount of coffee can fix this tired.”
Stop the comparison game
After reading these descriptions, my hope is that the next time you try and compare your fatigue or tiredness to someone with a chronic illness you pause and be selective of your words. Of course, everyone is entitled to be and feel tired, but it’s not an even playing field energy-wise when you’re a healthy, able-bodied person. Coffee, naps, and sleeping in help most of the population feel energized and re-charged, but fatigue with chronic illness is often untouchable. A full night’s rest can still leave you feeling exhausted. A coffee may have no impact. A nap may cause the fatigue to be even more pronounced. As an IBD mom, it can be frustrating to hear someone without a chronic illness try and diminish my personal struggles by equating them to theirs when there is truly no comparison.
As a patient advocate, you also become somewhat of a confidante and voice of reason for your peers in the community.
What I do want—is for people to recognize what compassion fatigue is…and how as chronic illness advocates and caretakers we need to be mindful of how we’re feeling and internalizing the struggles of those around us.
I offer support from the bottom of my heart, but as a mom and a wife, I do need to recognize when it’s time to unplug and take time for myself. When my baby naps each morning—I spend that “break” on my computer writing articles about IBD, participating in Twitter Chats, and talking on the phone with those who want to hear about my patient experience.
As part of my self-care and disease management I need to de-stress, so I don’t put my own health at risk. This article is painful for me to write—I can’t stand admitting that I am struggling to do it all. But, compassion fatigue has been something I’ve been feeling for a few months. I want to be the best advocate for others and do all I can to make a difference and show there’s so much life to be lived outside of your disease. I want you to see how much you can thrive with this disease and all that you can accomplish. I want to be the person I needed the day my world turned upside down when I was diagnosed. I want to be all the things. But it’s not possible. It’s not fair to me, it’s not fair to you.
est to paint a picture for you. My legs feel like complete jelly. My brain feels in a fog. I feel so lethargic; the thought of showering seems overwhelming. I’m not in pain. My stomach feels fine. But, there’s something “off” and you feel it with every part of your being.
Living in the Midwest, I didn’t want two winter days with temps in the 80s to pass without enjoying them. I knew the fresh air and exercise would be a welcome excursion for my little man and me. Did those two walks with the stroller push me to my limits? What is too much? What is not enough? At 34, you feel lazy when you can’t keep up or have to admit you’re just too tired. You look perfectly fine on the outside, you feel like those around you wonder if you try and take advantage of your disease.
that stated, “Fatigue in IBD is experienced by up to 86 percent of patients with active disease and 41 percent in remission.” It’s crazy how common this is! For people with IBD, fatigue can be physical, mental or a combination of both.
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