Doctors and online patient communities

Our newest member says on her page that her doctor recommended she join this group which set me thinking. I have just changed my GP but the one I left behind rolled his eyes at mention of the Internet and I can imagine his cynical smile if I asked his opinion of online patient communities.
Have any of you been recommended to join a forum by your doctor? Have you told your doctor you are a member of one? If not, how do you think he/she would respond?

I told my PCP about membership in the forum and she thought it was great!

That’s really good to hear.

It's hit or miss. Some say I am "over worrying" myself by joining online communities and others think what I am doing is a great thing. Same thing with the foundation though, some role their eyes over it and some pat me on the back and encourage me to push on with it. How running a charity organization could be a negative thing is beyond me, but I guess to some, it must be. :(

In my personal opinion, I think this community is amazing!

I need certain work done by my doctor(s). What I tell them is more focused now after finding important things were not recorded in my medical file. But Ben’s Friends wasn’t listed on a resource list I was given, so I’ll mention it. I could find no narcolepsy support groups in Seattle, and online is nice; saves gas, saves on parking, no driving :slight_smile:

I think online is a life saver. When you hear only one in 2000 has what you have it’s a very lonely place to be and yes, so much easier to connect with people, no need even to get dressed!

It makes me happy to know people for whom narcolepsy is “normal”, meaning “Okay!” I hated being alone with a diagnosis that was a bummer when compared with wakeful people.

I totally agree, but have yet to meet a person face to face that also has narcolepsy. I would love to find a person that I could talk to that really understands. I do like the online conversations though because I can relate and never could before, and I always wondered if others experienced what I do:)

That is the whole beauty of online support groups. When I go to one of the large teaching hospital clinics I find myself watching patients in the hope of seeing symptoms like mine so I can introduce myself as a fellow ‘sufferer’! They assure me they see ‘lots of patients’ like me but I don’t know if it’s two a day or one a month. On one online group I belong to there is a chap who has an RV and tours the US making a point of looking up fellow members with the condition and if I could afford the petrol I would do the same in the UK.