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Avatar universal

?'s about your local Hep C Support group

I've been a bit puzzled by the really low attendance at my local Hep C support group.  I live in an area where the population is 350,000 give or take.  Out of all of those people, we get maybe 10 at most coming out each month to the support group.  Now, granted, I am one of the youngest ones there, the guy who leads it and the members are older and many of them retired and they communicate by phone rather than by technology.  They also don't advertise our support group meetings.  I'm gently trying to explore these things with the guy who has led the group for years without stepping on toes and suggesting we might want to advertise our meetings at the least and have offered to get us on the web.  

He seems to think people don't come out because of the stigma.  I was a bit skeptical at that but kept it to myself.  I'm thinking... if we all have Hep C, where's the stigma amongst ourselves?  However when I was talking with a woman from the local HIV/AIDS association, she said she figured people with HIV who also have Hep C don't come to our meetings because most of them will have been or are drug users and they do fear being outed for that, even if our group is based on a principle of "we don't care how you got it, we're all in the same boat".

Okay...after all that preamble....my question is .. .do you attend your local Hep C Support group?  If not, why not?  And I'm wondering what has been successful or unsuccessful for you in reaching out to others in your community who have Hep C?

Trying to get my group out of the dinosaur age without offending the dinosaurs.  Thanks!

Trish
18 Responses
548668 tn?1394190822
Hi Trish

Way back in 1994 I used to go quite regularly to local HCV meetings.  It was a huge mixture of ex-drug users, current drug users, gay men, Mums and families and hemophiliacs.    Because it was a 'recently discovered' (or should I say tested) disease, and because technology is not what it is now, it seemed to be the only avenue for information.

The convener was passionate and also had HCV himself.   He had to pass it over due to the progression of the disease and a wonderful young man (HCV negative) took it over, but also became ill with a non-related illness.

I didn't contact them for some years (I was 'waiting') for another shot at tx, but continued to get their Newsletters.    

Prior to this tx I went to another meeting, where there were only 6 of us (a far cry from the 15-30 who used to turn up).   I actually realised that my own research matched that of anyone there, including the convener.   I did, however, get the phone numbers of 2 other people on tx, and have maintained contact.

I think there is less funding for a support group and perhaps they haven't been able to keep up with the technological age (i.e. I would be txting members when meetings were on, or e-mailing them).  Meetings aren't as regular plus information these days is more easily accessible over the Net.   I found Medhelp & Janice & Friends and the Australasian internet site where my local support group could not offer the same.   My local Hep C does not seem to keep up with the latest studies etc; and seems to be more of a lifeline to those who have recently discovered they have the illness.  

So, for me, the local support group is a little stale, but certainly I will continue to support when and where I can (and if I win Lotto would offer a cash injection with a resident researcher and IT tech :-).




Avatar universal
No, I don't attend.  Too tired at the end of the day.  I've never felt I've needed support in person.  This forum has been enough for me.  I really don't give a rat's patoot about stigma.  If you need one of one or group support, seek it out.  If you are comfortable getting through treatment and the effects of HCV without that type of support than that's good too.  
Also, I'm not a social creature by nature.  Not a joiner so that probably has a lot to do with it too.

Trin
Avatar universal
Trish,

Read over what I posted.  Sorry, did not mean to sound like support groups are a bad thing because they are so helpful to many.  
I guess what I was trying to say is I haven't been involved because of so many other things in my life that require my attention it just don't have time and I've always been uncomfortable in groups.  
Don't know if gas has been high in Canada like it has been here but that may be a factor too.  Even though gas has gone down here, I still find myself traveling less because I got into the habit of it when gas was so high.
I know you are trying to help people with hep c and find that admirable indeed.
Trin
Avatar universal
When I was initially dx'd, I went to a support group, twice. Both times there were only 2-3 people there. I've heard the group has since folded. I don't think it was advertised very well either. Location was also an issue, as it was held in a downtown hospital, so for me it was a half hour drive plus $10 parking.
Avatar universal
People are different.

For me, you could pick me up at home in a courtesy car to drive me to an HCV support group, pay me to attend, feed me dinner and I still wouldn't go.

For those with online access, the rewards are so vast, that an encounter group would be lame by comparison. We can find buddies online who not only share HCV with us but share our values about life. This is much more limited among even a high turn out support group in the flesh.

Before the internet, I may have attended for lack of something better but probably not.

I enjoyed my Lamaze classes and my 85 year old friend enjoys her Alzheimer's support group, although she says it's just to escape her husband for a couple of hours.

It's just not for me, no matter a dinosaur meeting or a cutting edge meeting.  I'd rather spend a rare night out doing something fun, even if I have to crawl to get there. And then chat about my night out on the town with my HCV pals online, who understand why I crawled to the car while others were astonished.

xoxo
Port
Avatar universal
I don't know of any local Hep C support groups that I could attend.  Never have I seen anything advertised.  I searched online for one a while back and the closest one wasn't even in my same state.
Avatar universal
I am same,  my Nurse keeps wanting me to start  one here. I do not want to.

To each there own,  I think some people they are life savers,  for me no.  

You know that is why this forum was so important to me.  Yes, I have learned stuff on here.

But more for the compainish.
276730 tn?1327966546
No I dont attend one either....I feeel this forum is my support.
I never saw anything advertised..however if I called the local hospitals Im sure there would be some support group somewhere..

Its just not for me...The forum is ..I feel very close to this place and all the people here....

I dont have an urgency to find one.


Love
Charm
Avatar universal
I would not go to a local support group.  I would worry about confidentiality.  

dointime
Avatar universal
good point DT!
338734 tn?1377163768
I don't attend, but have been meaning to. 84 weeks worth of procrastination, I guess. I discovered the existence of a support group at the same time I found this forum (to be fair to myself, this was after a lot of dealing on my own: transplant, first 4 months or TX, etc.).

I have felt this forum has been a Godsend and I haven't sought out the in person forum. I feel a little guilty that I could have been supporting a local group, but really, I have been either too busy or too tired or both. Most weeks I would have not wanted to make the trip into town.

Online support is an easier sell as it can be totally anonymous. In person is a little different, but really shouldn't be.
Avatar universal
I just wanted to say that I've had time to read but not respond and I'm digesting everything that's being said.  I'm learning alot.  Just one wee comment in that the reason I go to my local support group is that it keeps me in touch with what's going on with Hep C in my backyard - in my own country and in my own city and what people's treatment experiences are and what resources are out there with regards to their Hep C in my own 'hood so to speak.  Once I started going and met the handful of people who come out, I got kind of attached to them, partly because there was always the odd new person coming out who was at various stages of their Hep C journey and needing answers and somebody needs to be there who has them and it seems that those coming to the support group just seem to know less for some reason and maybe because they use technology less or ... the medical system still leaves alot to be desired when it comes to Hep C.
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