Things I’ve learned from talking to doctors about fatigue (related to #sjogrens #migraine #dysautonomia ) a thread:
1). Be dramatic. Now is not the time to put a good face and minimize. Say if you’re bedbound, housebound, unable to do a simple errand.
2). Include technical terms like ADLs (activities of daily living) and PEM (post-exertional malaise). “Fatigue” is too vague and many clinicians don’t have the ability to imagine the level of fatigue you are describing.
3). Give context and backstory, for reference. It’s harder for a doctor to minimize your experience (“you look good”, “your labs seem fine”) when you can contrast what you’re like now with what you used to be able to do.
4). Be scientific. Data on number of days in bed or hours of lost work is harder to dismiss.
5). Bring in ideas gleaned from patient groups. Even the most caring doctors often have no clue of what to try for fatigue.
6). Watch out for misogyny, even from women doctors. Helping middle aged women live up to their potential doesn’t seem to be a huge priority in the medical zeitgeist.
7). Resist getting sidelined into CBT, exercise and weight loss advice, or mental-health diagnoses. It’s so easy for the patient to internalize the message that fatigue is something you could fix yourself if only you had the willpower.
Anybody have other suggestions for talking about fatigue? I learn so much from chronic illness Twitter every day. Especially grateful to @SarahSchaferMD @NeuroSjogrens and the #neisvoid crew. ❤️
• • •
Missing some Tweet in this thread? You can try to
force a refresh
