6 Things That Make Fatigue The Worst
In my opinion, fatigue is the worst symptom of spondyloarthritis. Don’t get me wrong, the others deserve respect fitting the ruthless wrecking balls that they are. Pain excels at agony. Stiffness and reduced range of motion can leave anybody frustrated or crying. Fatigue is in an elite class of doomsday villains, unsurpassed in terms of sheer power to incapacitate and deactivate our people. Sigh. But what makes it the worst?
1. Fatigue is a nonspecific symptom
It's a symptom of stress, anxiety, painsomnia, treatments, and 1,000s of other illnesses.
2. Fatigue has no discernable identity
It’s easily confused with the universal temporary experience of being tired.
3. Our culture doesn't prepare patients to view fatigue as a serious threat
Before diagnosis, mentioning being fatigued or worn down will elicit the following responses:
"Welcome to the club."
"It's part of aging."
"Maybe you're just working too hard."
"Nobody feels great all the time."
The responses don’t always improve after diagnosis. Our "overcoming" culture isn’t designed to help disabled and chronically ill people find their way through life in imperfect and fragile bodies. We are expected to get better, not to let it bother us, or grind through by sheer force of will and determination.
4. Spondyloarthritis fatigue is mysterious!
You’re not imagining that vague sense that you might not have the whole picture of what’s happening inside your body.
Our people often report substantial fatigue even when their arthritis is in remission. This reflects gaps in the search for a complete range of treatment targets. There haven’t been enough identified to wipe out fatigue.
5. Fatigue threatens livelihoods
Fatigue is a major threat to employment status. According to a recent article by molecular biologist Ana Pena, most inflammatory rheumatic disease patients are affected by fatigue, and up to 70 percent become disabled within 10 years. She confirmed that this process included reduced performance and impaired activity.1
6. Fatigue could get you killed
My fatigue was off the charts during the pandemic, but things became unlivable by April of 2021. On paper, not being fully vaccinated for COVID and the nagging feeling that I should lose more weight kept me from seeing my doctor sooner. The frozen in place feeling that only fatigue can bring also kept me from making an appointment about fatigue.
My doctor examined me, heard me out about feeling like a corpse enchanted with the power to walk and talk, sent me out for tests, and told me to come back in two weeks. Neither of us imagined what was coming. She called during dinner, saying my blood work showed multiple life-threatening complications of long-term NSAID use. 24 hours later I was seeing a hematologist. 24 hours after that I started infusions worth over $5,000 to save my life.
How did this happen?
Fatigue is a classic trickster with the potential to ruin everything. Sometimes it’s an obvious villain popping up to cancel holiday dinners or grocery runs, but it also works away in the background, wearing us down, making it hard to recognize how poorly things are going.
So yeah, fatigue is the absolute worst.
Do you use the word disability to describe your AS?