I just got back from Quaker Meeting (which is essentially church, just different). I had been really scared to go, partly because:
- I was afraid I'd fall asleep and snore LOUDLY (my sleep apnea makes me snore so loudly that the neighbors used to call in the middle of the night), and
- because I am so super-sensitive to people's ignorant comments about my newly diagnosed narcolepsy.
BUT. I chose to tell an acupuncturist acquaintance that I have narcolepsy, thinking she would be a safe person. She told me that I didn't need to live with narcolepsy, that alternative holistic treatments could cure me of it, and that she could refer me to the appropriate "healers." I realized as we talked a bit more that she had absolutely NO idea what causes narcolepsy, and believed that it was due to the body "being out of balance." She stated that since she had helped soldiers coming back from Iraq to cure their problems with getting to sleep at night and staying awake during the day, she could therefore cure any narcoleptic. I explained the neurological differences between depression, PTSD, and narcolepsy. I explained that in the narcoleptic brain, the cells that manufacture the sleep hormone hypocretin are killed by the immune system, and that the brain is not able to grow more of those cells, which is VERY different from the neurological imbalances of neurotransmitters in depression and also much of the problems with PTSD. Finally, I asked her whether she would say that she could also claim to cure MS, which results from different permanent neurophysiological changes. She FINALLY backed off at that point. But she did argue that she could cure my narcolepsy, still.
The whole conversation was upsetting to me. I have no problem at all with alternative therapies in combination with Western medicine. But her argument that alternative therapies could CURE my narcolepsy made me feel as if I am, in her judgement, essentially AT FAULT for having narcolepsy. Because clearly, if I've still got N, then it must be my fault for not seeking out and paying through the nose for whatever the "right" alternative therapy is. I've got enough problems without perceiving that people that I like and admire are BLAMING me for having narcolepsy!!!
So, I'm going to calm down, and write her a note, because I am sure that she didn't mean to leave me feeling angry and sad. But I'd like to know if ever in the history of narcolepsy, anyone has ever magically been cured. I want to know if there's really any basis, historically or recently, for her claim, or if she's just not making any sense.