Aa
Aa
A
A
A
Close
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
Sort by: Helpful Oldest Newest
547836 tn?1302832832
i don't have one, this is my support group
Helpful - 0
Avatar universal
Well.  Shiver me timbers.  I just opened up my email, the leader of our support group sent me an email asking me to bring up the ideas I discussed with him on our phone call and said "they are great!!" followed by multiple exclamation marks.  He didn't seem very accepting of them at the time we talked.  Maybe he just had to ponder them.  So...I'm presenting "ideas" at our meeting this Wednesday - advertising our meetings, getting an online presence and planning an outreach day for World Hepatitis Day coming up in May  that consists of various workshops and involving various of our members by delegating some of the tasks around to those who would like to help.  This is good news that he is open to these things.  We shall see how it goes.  This is good.

Thank you to everyone for your input.  I'm learning alot.  I don't want to see it from my perspective only, what good is that.  I'll look forward to learning more from the members of my group this Wednesday.

Trish
Helpful - 0
Avatar universal
and oh **** .. I just saw the length of my post to you, Mr. Liver ... sigh.  I really should check those things first.  I type 90wpm or so .. so when I get on a roll, the fingers just fly.....
Helpful - 0
Avatar universal
I really have to say this .. my post comes off as if the leader of the group is incompetent.  I actually have incredible respect for the man.  He has led this group for many years ... he underwent treatment that failed, then had to go through a liver transplant and has just finished 26 weeks of treatment again and here's hoping it takes.  Even during his treatment he kept the support group meetings going as much as he could.  He asked me to take one of the meetings but I'd just gotten out of the hospital from surgery and was flat on my back.  We do work together, he and I and he puts up with my over-enthusiasm and I try and know my place.  I have incredibe respect for what he's done and try and treat him that way.  I just have this urge to DO so much more and not sure quite what to do with it within the context with which I must work at the moment with this particular group of people who have whittled down to this core group of older people who meet each month and nothing much changes.

Trish
Helpful - 0
Avatar universal
All I can say right now after reading your post is thank you, thank you, thank you.  There is so much valuable information there.

I know I can bear out much of what you're saying for the short time I've been attending this support group.  I've seen people in distress come into our group and share their experirences with some whackadoo doctor and feeling that they aren't getting good care and having the rest of us validate their feelings and give them ideas on who they can see and what they can do and we empower them to do what they are second-guessing themselves on.  And I have gratefully seen them go on to better treatment options than what they are getting.

We've had little discussions where someone will talk about itching and someone actually said "get Joe's so-and-so cream, they sell it at Zehr's - it's awesome!" and others will chime in and say they've used it and it's great.  You can't get that in an online group - who's going to tell you to go to a specific grocery store in your town for some obscure cream only the locals know about?  :)

My challenge, Mr. Liver, is that this group has been run by the SAME person year after year after year.  I can see that many of the things you're suggesting would help.  Now they are talking about FOLDING the group and joining with a group in another city that is SMALLER than my city and leaving our city with no Hep C support group.  I've suggested publicizing first before we fold and if we fold, I'm afraid I'm going to end up starting my own Hep C Support Group and that's not going to go over very well.  

I was supposed to attend a workshop that's happening under the umbrella of the provincial AIDS committee..important workshop.  And stupid me .. the leader of this group said he'd register both of us.  Well, he forgot.  And didn't tell me.  I showed up at the next meeting and he nonchalantly tells me that he didn't get us registered because he forgot and when he remembered, registration was full.  And if I wanted to go to the Ottawa workshop (six hour drive away) that was the only one still open.  Well, I was willing to go, this is that important.  Only THAT one was full too by the time he told me.  Grrr and double Grrr.  i will never again let him do such things on my behalf and his nonchalance about it was very upsetting only I couldn't say much.

I'm willing to do ALL of the things on your list - to prepare promotional materials and put them out, to get us into local health fairs and advertise our group, to put posters up at hospitals and all that.....but....I'm not the leader of this group.  I really don't know WHAT to do.

I also feel we need to restructure how we run the group.  To do what you said.. have a bit of social time at the beginning where we catch up on each other's treatment and situations and greet new people and then get down to business.  The guy running the group seems to kind of ramble all over the place.   I'm treading very carefully here because I am NOT the leader of this group and I don't want to alienate him or anyone.  However, I do think we can accomplish so much more and reach out to SO many more people in this community of ours.

I have broached the idea of advertising the group to him.  He's somewhat open to the idea ... he tells me doctor's offices have refused to carry our pamphlets.  I'm thinking that I'll speak to my family doctor about this as he's a terrific guy and get his take on this and what pamphlets doctors will display and what might be a better approach.

I also want to do networking with other Hep C support groups in my geographic vicinity and across my province.  I think we can have a better voice on some things if we work together on initiatives that heppers have in common.  I would like to invite those from other groups to come together once or twice a year to discuss the issues of concern and develop working committees to see where we can advocate for better treatment and health care and education on Hep C.

Does any of this make sense to you, Mr. Liver?  This is where my head is at and I do NOT have your experience.  Perhaps I should take this offline but I'd rather keep it here and have others continue to contribute their experiences.  

Thank you SO much for contributing to this thread.  You have me all fired up.  Can you tell?  

Regards,

Trish
Helpful - 0
Avatar universal
Meeting those who live in your community face to face cannot be replaced by any online experience.There is a difference in the level of connection that cannot be duplicated on the internet, especially using typed words alone. The written word is limited when it comes to communicating with people as most people know. Conversational interactions in people include body language, changes in voice, facial expressions etc, all of which can add much greater meaning to just words alone. A certain gesture along with a few spoken words can express something that would take a 1000 typed words to convey on paper and it would still fall short of the more exacting interpetation that can be found when allowed to converse face to face. The benefit of never having to guess as to the meaning or tone of the written word cannot be overstated. Conversation is much more dynamic in person.

Those in your local community with HCV face the same or similar challenges and experiences which many times are influenced by local community standards. This situational awareness does not exist with those online. You can more easily exchange unique useful information such as local hospitals, doctors, and transplant facitlities that would require some time to duplicate on the internet if its even possible at all. Support groups have many advantages.

While technical information is more important to some people than others it should not be the primary focus of a local support group. HCV support is so much more than medical or technical info about the disease. In fact, support groups who center their agenda around this usually fail. Some people are info junkies (like myself)  and its good to share the latest research, trials, etc..(Now, this IS something that can be done on the internet quite well.)  While info concerning medical research and trials may be useful for some what I have found is that most who attend local support groups want not only info about the virus and related treatments,  but to meet those in their community with the same challenges and compare notes and exchange info. They ask questions such as the best dentist around town who isn't afraid to have an HCV patient ? How about the best local doctor's to treat under ? Who has the best nurses,which can be just as important than the doctor when it comes to treating ? Who carries what products that may be useful to someone with HCV and/or treating and where to find them ? Local support groups produce quite a bit of volunteerism in the communities where they are. This is important to the purpose of an HCV support org as it helps spread understanding, awareness, and testing in your area. And there is an unquantifiable value of knowing those who live in a similar environment as you do. I could go on forever as to the benefits of personal meetings face to face with your local neighbors who share similar situations. Anything done online can be duplicated in a HCV support group meeting. The same however cannot be said of the internet forum setting. Don't misunderstand my position---the internet is a very beneficial tool for many with HCV, and in many cases the only avenue some can take to reach out to others who share similar health challenges. Its usefulness in this area cannot be disputed. But I still strongly recommend and encourage anyone that has local support groups available to give it a try .

To increase support group attendance there are some methods which I've seen work well. . Guest speakers (docs, social workers, dieticians, PAs, etc , or less mainstream therapies like self-hypnosis techniques, massage, etc can be topics) can be utilized which will usually increase attendance at local support groups. Especailly the massage one. One caveat is to reserve at least half the mtg time for the group to talk amongst themseelves. Putting out cards detailing local support group info and place them in biz card caddies at doctor's offices, blood diagnostic businesses, and local hospitals can be helpful. Brochures can be used but experience has shown the smaller the footprint the more likely you can get it in a prominent place like right on the desk or counter. Tent cards are great on tables in waiting rooms. Put flyers on hospital and clinic bullletin boards. Local radio stations can create PSAs to raise awareness. If your town/city has health fairs make sure the local HCV support orgs are represented armed with printed info. In the past I have arranged for local lab companies to run HCV antibody test for free at health fairs. Team up with local support orgs for AIDS/HIV, transplant and donor orgs for fundraising drives and more public exposure.

To those worried about anonymity what's to prevent a receptionist, or a lab tech, a dental asst.,and yes, even a doctor compromising your identity ? I've never seen local support groups in small towns so this shouldn't be a facor and if you live in a city you can attend a support group on the other side of town. Question: If you were to find out that someone from this forum lived in your town would you expect them to 'out' you upon this discovery ? Do you think any of them that you know from this forum would ? From persnall experience I can emphatically state that this has never been a problem in the 9 years of support groups I have been associated with. People who attend local support groups share the same plight and realize the importance of anonymity  (statements regarding anonymity is standard here upon joining a group) and are the LEAST likely to expose your condition to others. They understand the possible consequences of doing so. In fact they understand it better than anyone online in any forum because each community is unique as to standards and the prevalent thinking, be it mainstream, conservative or liberal. They realize the necessity of anonymity  if the group they attend is to continue into the future as a source of support for them and those like them. Without the guarantee of anonymity orgs like AA would have folded a long time ago I'm sure. Those with HCV are just as trustworthy as the alcoholics are.

If you want the best of both worlds, why not connect in person AND online ? I've never met anyone who said they were receiving too much support.

ML

ps- A smiley face will never replace a real smile.
Helpful - 0
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.
Helpful - 0
338734 tn?1377160168
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.
Helpful - 0
Avatar universal
good point DT!
Helpful - 0
Avatar universal
I would not go to a local support group.  I would worry about confidentiality.  

dointime
Helpful - 0
276730 tn?1327962946
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
Helpful - 0
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.
Helpful - 0
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.
Helpful - 0
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
Helpful - 0
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.
Helpful - 0
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
Helpful - 0
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
Helpful - 0
548668 tn?1394187222
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 :-).




Helpful - 0
Have an Answer?

You are reading content posted in the Hepatitis Social Community

Top Hepatitis Answerers
317787 tn?1473358451
DC
683231 tn?1467323017
Auburn, WA
Learn About Top Answerers
Didn't find the answer you were looking for?
Ask a question
Popular Resources
A list of national and international resources and hotlines to help connect you to needed health and medical services.
Herpes sores blister, then burst, scab and heal.
Herpes spreads by oral, vaginal and anal sex.
STIs are the most common cause of genital sores.
Condoms are the most effective way to prevent HIV and STDs.
PrEP is used by people with high risk to prevent HIV infection.