Narcolepsy Support Group

I know how you feel. I take my time before telling anyone I have narcolepsy, and only mention it if it is relevant. It is hard to tell people, because everyone has different ideas about it.

The biggest struggle I had was with myself. Because I am so tired, I feel like I am lazy (I'm not actuallyy, I just have no energy).

This group has been wonderful for showing me that I am 'normal' and going through common struggles of narcoleptics.

People who don't have a condition like this can't really relate, so it's nice to meet people who understand that I'm not lazy, but have legitimate issues that actually are not under my own control.

So thanks to everyone.

I also am considering starting a support group, and plan to discuss it with my sleep specialist, to see if he has any advice. Does anyone else have any tips on support groups?

those who need to know family- friends- strangers and those who do not know family -friends strangers --those who want to understand and learn thank you-- for those who refuse and and judge good day

I have had my diagnosis for almost a year now and I do think that my family is really beginning to get it. Not perfectly but better. I think I am actually lagging behind them in that I still tell myself I shouldn't need to go take a nap...and get mad at me for what I don't get done. I tell people if it comes on in conversation...like mentioning I was going out of town I pretty readily told people I was going to a narcolepsy patient conference...pretty common to get, "but you don't have narcolepsy do you"? Much more comfort now then months ago in just saying, "yes, I do".