This article was first published on the Global Lyme Alliance blog on April 7th, 2017. Most of the links on this post are informational, but a few are affiliate links to help maintain this website.
I remember the moment when my husband said, "I get it," and I knew he did. It was the time he'd developed an acute bladder infection and was stricken with a high fever. I had to go to work, so he took himself to urgent care. Later that evening he said, "I think I was putting on a show at the doctor's office, I probably didn't even seem sick. Then, as soon as I got home I completely crashed. I haven't moved from this chair since." That was it. The feeling I'd been trying to describe to him for years. It's like using every last bit of adrenaline to get through a show, only to immediately collapse in the wings afterward. He could finally understand what I go through on a daily basis.
Everyone can relate to what it feels like to be tired. There are a million things to do and never enough time in the day. We stay up too late, clinging to the few hours we're not working, and then slog through the morning fueled by cups of coffee.
Chronic fatigue—a common symptom of Lyme—is completely different. Chronic fatigue is a medical diagnosis and cannot be healed by a good night's sleep and a day without commitments. It is there when you wake up, there with you all day long, and there when you fall asleep. Chronic fatigue presents differently in every person. Here are a few perspectives from others in the Lyme community:
"I feel like I am walking around with weights attached to my body."
"The fatigue is like every little thing that you need to do, like say fold laundry, that would take a healthy person a half hour, takes a person with Lyme hours. We have to rest in between. I actually spend more time resting up to do something, than actually getting it done."
"Not quite up to starting the big game, but the big game is every day."
"Feeling like you have been hit by a train or have a terrible case of the flu and are incredibly weak and tired, and that you can only get off the couch or out of bed with a huge effort. It is hard to think straight and nearly impossible to get anything done."
"It feels like you just finished running a marathon that you hadn't trained for…and at the end of the marathon, you also got the flu and also got struck by lightning, which caused everything in your body to shut down."
My available energy comes and goes in cycles, and sometimes it's difficult to know how much energy I will have to spare. This is especially true in social situations, which seem to be the most draining. One day, I had the energy to go out with friends. I felt great, better than I had in months. We got Mexican food and talked for hours. We were joking and laughing so much, I almost forgot about my illness. I thought, I must be getting better, I haven't had this much stamina in months. When I went to sleep my spirits were high.
Then I woke up and I couldn't get out of bed for two days.
This is the difference between chronic fatigue tired and just being tired. There is a limit to what a person can do, and when they overdo it, it takes days to get the energy back just to take a shower. This was the feeling I found so hard to describe to my husband, which he finally understood when he got a serious infection.
Some Lyme patients are wheelchair bound, or spend months or years confined to a bed. I am fortunate in that, as long as I don't run myself into the ground, my bouts of fatigue last only two to three days. I can't imagine what it is like to go days on end and never feel the energy to get out of bed, but that's the harsh reality for many Lyme patients.
It's hurtful and invalidating when people compare chronic fatigue to just being tired. Lyme patients' fatigue is caused by our bodies constantly fighting off illness, then on top of that we have to do everything else other people do on a regular day. We get so used to it, we forget what it feels like to be normal.
Next time, when you're discussing your chronic fatigue and someone says, "I'm tired, too," politely remind them it may sound like the same thing, but there is absolutely no comparison.
"Not one drop of my self-worth depends on your acceptance of me." - Quincy Jones
I'm Kerry (She/Her/Hers) and I am a licensed therapist, group facilitator, poet, writer, & speaker. This is a place to acknowledge and validate our suffering and trauma, while also learning how to turn toward aliveness and spaciousness.