Christina was diagnosed with Chronic Lyme Disease in 2011 after a long 5 year battle of misdiagnosis. She took a passion for patient advocacy and a need to share her Lyme Disease experience to create Lady of Lyme. Today, the website has become a space to help others understand Chronic Lyme Disease on a deeper level and connect with others fighting the same fight.
When I was in college cramming for finals running on 3 hours of sleep, I always assumed that was the most tired a person could feel. As I dragged myself out of bed and headed to Starbucks for 3 shots of espresso, I would mutter to myself, “I’m such a zombie, I’m so exhausted, this is terrible!” There is no denying I was incredibly tired, but what I didn’t know at the time is that there is a difference between being tired from a lack of sleep, and experiencing tiredness on a whole new level; fatigue.
Fatigue: extreme tiredness, typically resulting from illness.
Tired: in need of sleep or rest.
When I got my first dose of fatigue first-hand from my illness, I couldn’t find the words to convey what it felt like. The closest I came was, “It feels like I was hit by a semi-truck”, but even that didn’t do it justice. Fatigue is such a deep whole-body exhaustion that blinking is painful and breathing feels impossible. It’s like darkness crawled into every single cell of the body and depleted every ounce of energy. If anyone has every had mono then that would likely be the closest example that would compare. No amount of sleep can satisfy fatigue; you wake up feeling like you never slept a wink.
So often I hear people belittle the symptom of “fatigue” in those who have a chronic illness. You can’t see fatigue on a person, you can’t touch it or make it tangible, so people assume it must just feel the way they do when they’re tired.
If fatigue felt the way I felt after a week of cramming for finals in college, I would be jazzed. Because the real fatigue is one that wins every battle; Will I make it to the shower today? Will I be able to walk to the kitchen? Fatigue decides. There is no mind over matter, there is no choosing to force yourself up. Fatigue is an intense exhaustion that rules all and controls all, even in the strongest of soldiers.
This is very important to note: Fatigue is not an optional feeling the way tiredness is. You can be tired, chug a Redbull or coffee, and power through a few more hours. Being tired doesn’t stop you from completing normal daily tasks like taking a shower or washing the dishes. It doesn’t feel good to push yourself when you’re tired, but the difference is that it’s non-negotiable with fatigue.
When a patient with a chronic illness calls in sick for work, cancels dinner or postpones any other plans because they are too fatigued, it’s likely they feel as though every ounce of life was sucked out of them. It’s common and easy for people to disregard this as an “excuse,” or feel as though it isn’t valid. Coming from the perspective of someone who was once healthy, I understand the logic. People think of what tired feels like to them and assumes that must be what tired feels like in an illness, so why can’t they push through? Why are they so flaky?
I spent a long time blaming my own self and my own body for not cooperating better in regards to “being tired.” I soon learned that the key word was “tired,” and that wasn’t what I was experiencing. I had crossed over from tired into the territory of fatigue, and that was a whole new beast.
A change in the stigma surrounding the word fatigue in relation to chronic illness begins with acknowledging that there is a difference. I myself did not know the difference because so often in the English language we toss together words with similar meanings and use them interchangeably.
It is important to make note that fatigue is not just that run-of-the-mill tiredness you feel after a long week to remedy with a cup of coffee. Fatigue is crushing and leaves a person physically immobile, but not by choice.
If someone cancels plans or shares that they are struggling with fatigue in their illness, I simply hope that this post can shed a bit of light on what that might feel like and how it impacts them. At the end of the day being tired and fatigued are both pretty terrible feelings, so since it’s 2 am here at the moment, I wish a good night to all.