Imagine you are standing in very thick waist-deep mud. You need to wade yourself through about 50 feet. You try to move your legs forward, but you feel the force of the mud pushing you back. Against a ton of resistance, you move your right leg. You try to move your left leg, but you lose your balance and fall back two steps.
You have to hurry. You need to get to the end of the finish line, and fast. You step forward again and are able to maintain stability. On your next step, you feel an invisible force pushing your body back, almost like a magnet pulling you down. You muster all the strength you can, and you move forward. You finally reach the finish line, but it took you an hour to get there. It seems much slower than it should have been. Now you are late, and you are even more tired than before you started.
Read more about PBC signs and symptoms
You used every bit of energy you had just to cross the finish line. Your fatigue is through the roof. So you lie down and take a 30-minute rest break. After you rest, you try to get back up. But as you try to move, you feel the magnet pulling you back. You feel too weak and far too exhausted to continue. You feel hopeless, and you feel stuck. You’re hoping you can recover to try to move again, but who knows how long that will take?
That’s what chronic fatigue feels like. And that’s something that most patients with primary biliary cholangitis (PBC) feel nearly every day.
Like a force pushing me down
For me, chronic fatigue is the worst part of having PBC. I worked night shift for years, running around a hospital for 13 hours a shift. My shift was from 6:45 p.m. until 7:15 a.m. After work, I would have a hard time staying awake on my half-hour drive home. By 9 a.m., I would be in bed to go to sleep. On my days off, I would try to wake up at 5 p.m.
I remember when my alarm went off, I would try to move to turn off the sound. But I couldn’t move. I could open my eyes, but I wouldn’t be able to physically move my body. It felt like this force that I could not see was pushing me down and keeping me on my bed. No matter how hard I tried, I could not move my arms or legs or even lift my head. This could last for hours. At the time, I thought I was just tired from running around a hospital all night. The idea of having any autoimmune disease never crossed my mind. Looking back on it now, I feel silly that I missed that symptom. And I missed it for years.
I once read that a healthy person would have to not sleep for three days to feel the equivalent of chronic fatigue. Healthy people are able to rest and wake up feeling refreshed. Waking up feeling refreshed is something that I rarely experience. When I’m having a severe fatigue day, it’s incredibly difficulty to get through the day. And I never know when the fatigue is going to hit me. When I’m having a good day and feeling well, I tend to do a lot more than I normally would. Then for days later, I experience fatigue. It can take several days before I feel halfway normal again and not like I could fall asleep while driving.
After switching from night shift to day shift work, I still experienced bouts of extreme fatigue. That was when I really started to think that something was wrong with me. It’s not normal. and I think the fatigue is something that can put a barrier between those who experience it and those who don’t. Friends or family always say, “I’m tired, too.” But the difference between being tired and feeling extremely fatigued is that a healthy person can go to sleep and feel fine the next day. That’s not how it works for those with chronic fatigue. You don’t truly get it until it’s something that you have personally experienced.
Chronic fatigue makes being alive feel very hard.
