Say It With Me: My Fatigue is Not My Fault
Fatigue is a central fact of my life. I have to plan everything around my need for rest and, finally, I am at the point where I believe it is not my fault. This is groundbreaking. Let me explain.
While the physical pain of ankylosing spondylitis is often the most unbearable symptom, its wicked sidekick, fatigue, has actually stolen more of my time and wrecked more of my plans than the pain has. It is also the symptom for which I’ve blamed myself the most, even though it is a well-documented aspect of the disease and I’ve gone to nearly superhuman lengths to get rid of it. You name it, I’ve tried it.
Biologic medications to lower disease activity? Check. Anti-inflammatories? Check. Sleeping ten to twelve hours a night? Check. Cutting down on social obligations? Check. Switching to an anti-inflammatory diet with no gluten, dairy, or sugar and lots of vegetables? Check. Seeking out both traditional and integrative physicians who specifically treat chronic fatigue? Check. Taking all of the supplements said to increase energy? Check.
It’s the only thing more relentless than me
After six years of turning myself inside out to fight it, fatigue is still my nemesis. Even when my inflammatory markers are down and my disease is well-controlled on paper, I have days where it feels like my limbs are filled with cement for no logical reason. I have mornings where I simply cannot get going for several hours, if at all. And there is never a time I am not carefully budgeting my energy for the day so that I don’t become couch-ridden before I finish my daily tasks. When something that I find unacceptable persists in my life, I tend to point a finger at myself—simply because there is no one else to blame.
“Maybe you’re just being lazy.”
“Don’t be so weak; pull yourself together.”
“Maybe if you were a stronger person you could push through this.”
“You probably flipped on the HLA-B27 gene because you didn’t eat healthier/sleep enough/take good enough care of yourself—so if it makes you feel better, this whole thing is probably your fault.”
My inner voice can be a total jerk. Can you imagine if someone walked onto a hospital floor and started saying that to sick patients? Saying it in your own mind is just as cruel and absurd. It would make more sense to be angry at the limitations and shortcomings of medical research or the medical community at large, but I tend to turn my anger inward rather than outward. Finally, though, I see that beating myself up drains me of whatever small remainder of energy I have—and it doesn’t pass the logic test.
Redirect your self-talk
Grounding myself in reality helps when I start to get lost in my emotions. So here’s what I know for sure, which I hope you’ll also repeat to yourself as needed.
The fatigue of AS is not the same as feeling tired and it cannot be fixed with a nap or extra sleep. Studies show that the systemic inflammation of this disease is what causes it, specifically the inflammatory cytokines that are flooding our bloodstreams and attacking our healthy tissue.1 Until science identifies all of the cytokines involved in this process and can effectively and safely block them—or find some other effective treatment—continuing to have symptoms is 100% normal. You are not lazy.
No one wants to feel completely exhausted all the time, period. No one wants to opt out of exciting work opportunities, RSVP “no” to weddings, cancel a beautiful getaway, or miss other important life events because of fatigue (all of which I have). You are not copping out. When you get down on yourself, remember all of the things you’ve had to pass up because fatigue gave you no choice. Feel compassion for yourself; most people would not handle this well.
And when that wonderfully creative mind of yours wants to blame you for not taking better care of yourself (remember, it’s looking to pin your suffering on something, anything!)—the fact is most people develop symptoms before they are even 30 years old. My back pain started in my late teens and early 20s. What could I have possibly known at that age about disease prevention? Plus, AS has a strong genetic component; research shows 9 out of 10 people with AS carry the HLA-B27 gene—so there is a very slim chance anything could have prevented it.2
Give yourself credit because no one else will
The fact that I can still keep my life together while feeling chronically sleep-deprived (I am not; I sleep more than most people) or like I have a bad hangover (not a sip of alcohol ever), frankly, deserves a medal. And if this is you, too, you also deserve one. Sadly, battling an illness is not really an accomplishment that is celebrated in our society. No one is handing out this medal so we have to be the ones to give it to ourselves.
Do you use the word disability to describe your AS?