Posted by Maha Parakala on September 08, 2021
In preparation for presenting a breakout session about Fatigue, Sleep, and IBD at the upcoming Live Online Community Conference (LOCC), Nour and I (Maha) have shared our own personal experiences with and perspectives on IBD-related fatigue.
Nour's Experience:
When I was diagnosed with ulcerative colitis 11 years ago, I wasn’t prepared for the side effects that would be a result of the disease. I actually wasn’t aware that there could be extra manifestations of the disease that present differently in each patient. As a patient, it was hard to separate what was normal and atypical and when the atypical starts to become your new normal. They slowly merge together, and you begin to forget what pre-symptom days looked like.
Fatigue has been one of the greatest challenges for me. If I had to identify one side effect from IBD that has greatly affected the quality of my life, I can say without a doubt that fatigue has been one of the most debilitating and frustrating symptoms. I actually cannot recall when it first started but I know it has been hovering for as long as I can remember. It’s like the invisibility cloak from Harry Potter. You can’t see it, but the patient knows it’s there.
In describing my fatigue to others, I often use several iterations to explain how it feels to me and I sometimes express it as like “driving in a fog” or “feeling like a zombie” or like “you are walking with heavy weights on your back”. Sometimes I joke that even my “brain feels static-y”. If you know what radios are (I’m showing my age here!), well, radios have antennas, and depending how the antenna is moved, it can make the connection poor, or improve it. And unfortunately, if you can’t get a good connection, all you will hear is static. On my bad days with fatigue, my concentration levels and focus plummets because all I can hear is the static.
For a really long time, I wasn’t sure how to address this symptom to my doctor let alone to peers or colleagues. Fatigue is not a measurable symptom that can be isolated through blood work and explaining it to others sometimes leads to disheartening comments.
I did what I do best – researching and learning. I wanted to know everything I could about fatigue, from its clinical definition to patient experiences. Interestingly, in many of the papers I came across, one interesting trend is lack of a clear definition of fatigue. Many patients with IBD and other autoimmune diseases have reported chronic challenges with fatigue, and it would be valuable to know and understand how it translates to quality of life and thriving. For the Fall Conference 2021, we are interested in bringing light to this very important issue and focusing on “IBD and Fatigue” to create a stepping stone for future projects that can further illuminate the multifaceted components of fatigue.
Maha's Experience:
Fatigue has probably been one of my most constant symptoms with IBD, even in remission, and it can be incredibly frustrating when it interrupts daily activities. Calculating if you have enough energy to get through your planned day is a mental game that is not only exhausting but can also be demoralizing. It took me years to figure out what helps my fatigue and how to plan around it, but it is still something I have to deal with constantly. And when you’re flaring, the fatigue is even worse and takes a toll on all aspects of one’s life.
We also asked other PAC members to share their experiences with fatigue to show how widespread this concern is. Here’s what they have to say:
I experience fatigue in remission and flares, and it’s had more of an impact on my life than any other IBD symptoms. It can make it really hard for me to get work done and socialize. - Becky
My IBD definitely makes me have a lot of fatigue. Sometimes even if I sleep for over 10 hours I still feel like I could lay in my bed all day. - Mira
Fatigue looks like me smiling and willing to work/hang out on the outside, and nagging pain and sleepiness that has me craving getting into bed on the inside. It affects my motivation and ability to complete all the tasks I want in a day. I’ve learned to take it easy on myself for needing to put my health first some days. - Natalie
Fatigue is an incredibly complex topic, and knowing that so many IBD patients are struggling with it motivated us to study the various factors that play into fatigue and how these can be better addressed in clinical settings. Some of our goals for this research project include demonstrating the debilitating effects of fatigue from IBD via patient and provider surveys, as well as investigating how IBD-related fatigue is discussed and approached. Our hope with our efforts is to help provide patients and care teams with the necessary support and guidance in managing fatigue, so that patients can thrive in their lives; doing things they love without worrying about paying the price later.
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