Today the Washington Post had a Q&A with a doctor about jerking while falling asleep (hypnic jerks). Because what is described resembles my condition (about which I posted yesterday), several people sent me the link. The quoted doctor may not understand how his words can cause harm, and how easy it would be for them not to.
The doctor addresses how hypnic jerks normally occur. In doing so, he misses how they, or things like them, can occur abnormally. Therefore, his advice comes off as insulting to those of us who struggle with sleep myoclonus and don’t have anxiety, aren’t stressed, and have already optimized sleep hygiene.
All he needed to add is, “If you have tried all this and still have problems, consult a specialist.” He could say more, if he knew more, but at least this would be enough to signal to patients like me that we’re heard. Without such words, we feel unwelcome by a health system that already has too little to offer us.
This is one big thing I’ve learned about having a rare disorder. Those with my condition, and undoubtedly others with rare disorders, are sometimes purposefully and sometimes accidentally dismissed. It’s frustrating and causes harm.
