Recently I came to the realization that when I was an RN and my patients would say "I'm tired" and I would confidently nod, relying on my disease knowledge, and say "I understand "....I had absolutely no clue what that "I'm tired" really meant from the patient perspective.
Living on the other side of the equation I now understand it is the kind of tired you get no relief from...day and night you scramble and scramble to stop falling over the precipice into the land of flare ups and worsening illness. When we inevitably slip over the edge due to fatigue, everyone confidently looks us in the eye and say "You gotta do better next time"....as if we enjoy suffering and know nothing about what it is like to exists in a daily battle with our illlness...and pay the price when we lose. And when we do well, health care professionals and everyone else pats our backs and commend us on doing such a great job of not falling off their health plateau not thinking about exactly what it costs to keep clinging to that crumbling edge.
The sacrifices we make...the things like employment...valued roles...relationships...connections...hopes...dreams...things of great meaning that we have had to stop carrying just so we can manage the burden of our illnesses...losing those things also means losing all the positives that come with them.
In my previous life of wellness I was never once as tired as I am now. Even on my craziest 12 hour plus shift in the ICU short staffed with 6 code blues, no breaks, running full speed....it never came close to the tired I now live with.
All this to say next time a friend, colleague, acquaintance or patient with a chronic illness or disability...especially an invisible one....says they are so tired stop and listen and think about what that mean to them. .
Also....don't be an asshole and say shit like "I know what you mean, I only slept 4 hours last night and haven't had my coffee yet"....coz that shit will have me judging you while I imagine punching you in the face.....knocking your teeth out...or kicking you in the groin. Whichever makes me feel better.