support for family members

[pamela]

Does DINET or any other group out there have a support system for the friends and family of all of us. I know half my family treats me like an piece of porcelin, and many are aggrevated with the wasy I feel and they don't know how to help or be encouraging. IE The husband. He is worried but confused as to why I feel so bad. Then there are times when he doesn't know just how bad I really feel and he gets so discouraged and frightened when I "crash". He is frustrated at the dr's and with the lack of info out there on Autonomic disorders and such like POTS,OI and neurogenic Syncope

Any Idea where they could get support and more info w/o it coming from me. When I try to discuss it with family and friends I often get blank looks and the feeling that they want to help, but just don't know how.

[Sunfish]

pamela -

i definitely agree with you that family members & friends need support too. dinet doesn't have anything specific but there are some members of the forum that are "support folks" (parents, spouses, etc.) rather than patients themselves. and if people want to chat more privately (not on the forum) they can always PM &/or email one another after meeting on the forum. or even if people don't want to join they can browse & read both the main site &/or forum, which can help many "get it" a bit better. another option would be through the meet others program; i know on my region's list there are a few caregivers/family members listed. i don't know of any offhand but i also know that there are some organizations - not specific to dysautonomia - that are designed for family &/or caregivers. there is also a section in the NDRF handbook for caregivers that might be helpful for you to pass on to those around you. you can download it for free at http://www.ndrf.org/NDRFHandbook.htm. it's not going to provide all the answers but probably wouldn't hurt. i know that there was a workshop on caregiving at the NDRF conference in 2002 but tapes were not made that year; i can't recall if the 2000 tapes include anything but i will let you know if i find out. regardless they're a great source of info that i would recommend to anyone - patient or family/friends.

i know i often think of the major effect my illness has had on my family/friends & wish i could do more in that regard...the fact that you realize this as well is great as it will definitely help your relationships....

melissa

[Michelle Sawicki]

We do help caregivers meet other caregivers in our Meet Others Program. Caregivers can sign up at: http://www.dinet.org/join.htm

Michelle

[pamela]

Thanks! I am going to Email my husband the ndrf handbook address. He is in Ga and I am in NC. He complained about being out of the loop on this stuff so I will pass the info to him. Again, thanks.

Also I will send the info to th military docs so they can brush up on all of this. They aren't to up to date an Dysatonomia or stuff. They have a habbit of finding your worse symptom then treating that. Luckily We are here in the civillian world for a year but then its back to the military hosp. for care..

[MightyMouse]

Pam, we also have a number of spouses, parents, etc. here on the forum, which is open to anyone who has a sincere interest in POTS, NCS, etc.

I've actually asked my family not to join here because I need the feeling of privacy (even though this is a publicly available forum). That sounds a bit selfish, but I didn't want to worry about venting about them and upsetting myself and my family members just by trying to problem solve here with my friends.

Also, I need a place to go where I can vent about how hard it is to live this way--and honestly, for as crazy as my mother makes me, I think it would cause her way too much worry. I've kind of gotten used to her denial--it's her way of coping with the fact that I'm very sick and she can't fix it.

Anyway, do what's right for you. For all I know, my mom is here anyway under a pseudonym...but I'll stay in my happy denial land 'cause she taught me well.

Nina