Putting the debate to rest: IBD fatigue isn’t your “normal” type of tired

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.

Caregiving During COVID-19: How IBD has helped one couple navigate the unknown

Rebecca Kaplan was only 20 years old when she met Dan, the love of her life. It was move in day her junior year of college and as she recalls “this skinny guy knocked on my apartment door to ask for toilet paper”. Her family laughed it off – because who knocks on a random person’s door asking for toilet paper – little did they know how that chance encounter would change the course of both their lives. This week, Rebecca explains how her role of caregiver has evolved over the course of a decade and how it’s helped her cope with the pandemic.

Dan and I began dating four months after that initial toilet paper introduction. Two months later, he was diagnosed with Crohn’s disease, right while my mom was starting chemotherapy for Stage 4 Non-Hodgkin’s Lymphoma. As someone who has been plagued with crippling anxiety her whole life, you would have thought I would fold under the stress of two of the most important people in my life receiving life-altering diagnoses at the same time. But I didn’t– in fact, my anxiety motivated me to embrace the role of caregiver.

Dan’s first hospitalization and the colonoscopy that went wrong

We had been married less than a year, living 90 minutes away from our families and our full support system. RK 5His disease had gone unmonitored for years and his new doctor was performing a colonoscopy to see just how bad his IBD had gotten. We were unaware that he had developed a stricture that was so severe that when she pushed the scope through, it nicked the wall of his intestines, causing a perforation and bacteria to get into his bloodstream. Within 45 minutes of waking up from the procedure, he had spiked a 104-degree fever and kept telling me and the nurses he thought he was dying. I was TERRIFIED. But I also found myself motivated by the fear and the anxiety I felt.

Instead of going into a full-blown panic attack, I went into caregiver mode. I knew I needed to be Dan’s voice because he could not speak up for what he needed. It was my job to demand the best care he could get, advocate for his needs, and focus just on him.

While taking care of Dan in the hospital required most of my time and attention, I did notice that I could only do it to the best of my ability if I were also taking care of myself. We lived 45 minutes away from the hospital with a new puppy and no one to take care of him. So, while I wanted to spend 24/7 with him while he was inpatient, I knew that I couldn’t do it for my own sanity. So, I made sure I went home multiple times a day and created a separation between myself and the hospital so I could decompress, eat (SO IMPORTANT), and sleep (ALSO IMPORTANT). Being able to do that meant that I was able to be at the top of my game when he needed me the most. RK 3

It’s been almost 10 years since the series of hospitalizations that started with Dan’s perforation and ended with him having a bowel resection to remove the stricture. And in those 10 years, I’m so thankful that Dan’s health has improved greatly. He’s gained nearly 50 pounds, works full time, works out, plays softball with his dad and brother, and deals with me.

Coping with the COVID-19 Pandemic

With his health stable now, the biggest challenge we’ve been facing the past few months is coping during the COVID-19 pandemic. I have been coping with the pandemic much better than Dan. I jokingly say that I’ve been training for quarantine my whole life, since my obsessive-compulsive disorder has always had me washing my hands, avoiding sick people, and wanting to stay home more than going out. However, Dan does not do well with change – whether that be moving to a new apartment, being diagnosed with a chronic illness, starting a new job, or having life turned upside down by a pandemic. Going from working full-time in an office to being trapped at home, isolating to stay healthy, has been hard for him. His regular life and hobbies have been stripped away from him, and not being able to leave the house and go places has left him stir crazy and agitated. RK 2

Because of this, I’ve put my caregiver hat back on in a different way. I’m not caring for his active disease; rather I’m helping him cope with change and the accompanying stress. I encourage him to do things outside as much as possible, whether that’s taking the dogs on a walk, kicking the soccer ball in the backyard, or going on a hike. I also try and help him see the bigger picture – we’re staying home so that he and our high-risk relatives stay healthy. And I remind him that this is not forever – it will get better and we will get back to normal at some point.

Rebecca’s Top Three Tactics for Caregiving

  1. Make sure you are taking time for yourself – that means eating, sleeping, and doing things to relax and take a break from being a caregiver. This is so important to help you be fully present for your loved one.
  2. Don’t be afraid to ask for help. When Dan had his surgery, our house was a mess and I wasn’t prepared to come home from the hospital with him. So, my mom and sister went to our apartment one night and cleaned/straightened it up for us so I wouldn’t have to do it after spending all day at the hospital.
  3. Find your tribe who will support you as the caregiver. It’s so important to build your own support system separate from your loved one’s support system. Being a caregiver is hard and making sure you have people you can talk to and rely on is so important for your mental health.