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Who do you turn to for support?

When you need it most, who do you turn to for support? Family, friend(s), online community, therapist, local support groups, etc.?

  1. Unfortunately, no one. I'm pretty closed off as far asking people for help or to listen to me when I'm ultra-whinny or just need someone to let me talk about what I go through on the daily. I have very, VERY, little support from my spouse, his mom who is 87, doesn't truly understand. When the people closest to you have very little knowledge or just do not give a hoot, you (or at least, I) don't have the desire to let people into your life. This is the main reason I wish to start a support group in my area. I know I can't be the only person going through life with Narcolepsy and no one even attempting to support you.

    1. Thanks...I've given my husband so much information, from doctors, internet resources, and even other people with narcolepsy. He accuses me of using narcolepsy as an excuse and refuses to accept the fact that narcolepsy is more than needing a nap sometimes.

    2. That is such a difficult situation, . Sometimes, people behave that way because they fear that acknowledging the illnesses and limitations of a loved one means they will have to contend with all the emotional and physical responsibilities that come with that acknowledgement. They deny it in order to supress emotions or emotional responsibility they think they can't handle. Could that be what is happening with him? Regardless, you can't force others to change. You can only change the way you react to them Have you considered seeing a therapist on your own to help you process his denial in ways that are healthier for you? Gentle hugs. - Lori (Team Member)

  2. My brother and cousin because they are they only other people who experience narcolepsy and truly understand. My GP does not cut it! I am new to this forum so i really hope it helps me gain more information and support.

    1. Welcome to the community, ! I am glad you found us. I wish your brother and cousin didn't also have narcolepsy, but how wonderful to have two people so close to you who understand. Do you see a sleep specialist as well as your GP? Have you ever considered finding a new GP? You deserve the best. Thinking of you and sending warm wishes your way. - Lori (Team Member)

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