Support Group?

[JulieAnn]

After doing hours of research yesterday morning for my bother, I came across some professional advice about how to care for your liver when you have Hep C, and one of the things it emphasized was being in a support group.  I've been trying to get my brother to participate in the support group in his area but so far he won't budge.  And then I wondered how many of you participate in a local support group, and if you would share with me the pros and cons of your experience and how important the availability of a support group has been to you.

In my brother's case, I think the fact that he already struggles so much with trying to work, take care of his home and take care of his four year old son that he has joint custody of, plus seeing his doctors and getting lab work done, that when he has free time he just wants to relax.  So I can't blame him.  And yet I know there are times when he's scared or confused about his situation and if he could share it with others that have dealt with the same issues, it would do a lot to ease his mind.

Julie

[robin]

Hey Julie,
I'm not a member of any kind of support group other than this forum. The closest one to me is about an hour away and they meet in the evening so I'm not one to get out and about much at night. Several people that I've met online do participate in local meetings with other people who have hep but it seems that most people use a forum like this as their "support". You can meet some really neat people here and many bond to form deep friendships. Keep your spirits high...robin

[Helen]

Julie.

 I have only belonged to online support groups. I think they are one of the greatest things to come along, open 24/7.  In most cases its much easier to pour out how you feel in writing rather than face to face. Its funny how well and close you can feel to the people you connect with online and I know its hard for people who dont do it to understand but I dont know what I would have done without this board. And the people I have met here have been the silver lining for me in this dreaded disease.

 Do you live near him? If you do maybe you can go to his house and let him sit with you while you come here and he can see for himself it might help him to get comfortable with it. I know for a fact we get alot of "Lurkers" and thats true with ANY type of forum. But once you make a post and someone responds it gets easier and easier. Sometimes when I get a bout of insomnia Ill log in here
and complain about it and it just makes me feel better. 

 I think this place could be a great source of help and comfort to your brother and I hope we will meet him soon. The Welcome wagon is waiting, all he has to do is sit down at the keyboard. I think it will surprise him how easy it can be. 

 Good luck, Helen 

[willy]

Great question........

My response is a lot like Helen's.

I was DX'ed 5 years ago in August.  I could barely work a computer.  There was a monthly like one hour meeting in a local hospital....... but it was never convenient for me, I was also unnerved about anonymity and..... it was also soon disbanded due to light participation.

In the meanwhile........ I started reading and posting here.  I was privy to all the posts; the questions, the answers and the personalities of people who had been here long before I arrived.  You can't cram that into a meeting.  Look how many posts there are in this forum alone.  That is a lot of reading.  Further..... what if one did a search?  You could arrive at many threads on the same topic and get a wide range of information on the issue you are enquiring about.  You end up with a great understanding of the topic..... lets say that it's liver biopsy in this case.  You might get 20 personal examples of peoples experiences getting one.  You might also understand that they vary a lot in the procedures that different hospitals use.  You won't get the range an intensity of feedback in a "support group".  If you did...... well....then the meeting would end and whatever miracle was related would virtually exist only in ones memory.  But here....... it is available to anyone 24/7.  [it's a sidebar but it really helps when one can't sleep at 3 in the morning you can see some other friend is up reading, tying, replying just as you are]

This forum can be read at ones leisure, [ a post or thread] printed for a doctor, e-mailed or copied and pasted.  Further...... it can also be responded to....in a day, a week, or in a year.  Bulletin boards are dynamic, alive and perhaps far more useful than a one hour meeting.

I have met some great friends on these boards.  I've learned an awful lot.  I've been exposed to more information, more ideas, more personalities that I could ever imagine getting anywhere else.  This has been like a college 4 year degree, except it's all been relevent, personal, exciting, free....... and yes, fun too.

I cannot believe all that I've learned at this board.  I cannot communicate the depth of understanding of the disease I've picked up here by merely typing and reading words. 

.........and the people.  One meets some incredible people; literate, funny, perceptive caring people that both give and receive care from one another.  One can also pick up some emotional intelligence from others that for the most part.....one never sees, hears or even knows their real name.

One is also given the opportunity to help other people at these boards.  I was amazed at how important that was to me.  I never wanted to help anyone except myself or my immediate family or friends.  Something happened along the way though.  When I was diagnosed people here answered my questions, listened, responded and accepted me.  When I was able to do it for someone else...... a newbie even newer than myself I understood a little better about how and why these boards work for the people that use them.  I don't think that you can adequately state the importance of giving some people appropriate assistance when they want and need it.

A little long...... but I thought I'd explain a little why this board has been so much more than just a support group. 

my 2 cents....

Willy

[Pancho and Lefty]

Welcome,

I'm a member of forums. . . they can be great support. Often the personal contacts made online can develop into real friendship. If your brother chose to become friends with a man about his age with similar issues, it could be great for them both. Yes. . . translating feelings and frustrations into keystrokes is awkward, even impossible depending on fatigue and confusion.

Face to face is good. It seems the issues members have in common are stronger than their personalities that might get in the way. I've traveled long distances to attend sit down meetings. The two I'm acquainted with are facilitated by local health dept nurses. Complete anonymity is observed.

A phone call from a caring friend is excellent. An unexpected call from a member of this forum may be the highpoint of my week. . . this week. We have feelings, doubts, and a whole lot of issues in common that many others simply do not understand.

Your brother won't get any benefit from fellowship with others until he gets out of his (dis)comfort zone long enough to reach out. That's the key. . . support is only available after one asks for it.

Good luck to you both,

Max



 

[Angel]

Hi...
      I do not attend any support groups because it's too far to drive and it"s at night only, I have no desire to be in Sacramento at night....it's like a small Los Angeles area LOL
                                                                                                           Angel

[beingbecky]

Julie,

I have only been to online support groups for hep c. I have met some really nice people here that I proudly call close friends today. 

Becky

[RiverRandy]

I am just on this forum for HCV support group and this has been a wonderful experience.  I would recommend that your brother checks out this site the heeper are wonderful. I have learn alot about HCV in the past 4 months with this group.  I understand your brother is very busy and tired but it will be worth his time an effort .

River Randy

[JulieAnn]

I want to thank you all for your replies.  I have been critical of my brother in the past for not involving himself with the support group available to him, but after reading your thoughts and talking to him (and more importantly REALLY listening to him) I realize the his support group seems more geared for people waiting for a transplant or have just received a transplant.  I see that forums like this allow him to share thoughts and wisdom with a huge group of people and is much more beneficial.

I will continue to encourage him to participate in this forum.  He's still not comfortable with the computer, but I hope to be with him near the Thanksgiving holiday and will come back to the forum and get him to register and post a couple of times while I'm with him so he can become comfortable with it.

There has been such an outpouring of support and encouragement.  I really feel you all want to "meet" him and involve him here and that is truly to your credit.  There is such empathy and support here and I know how much it has helped me and I know it will help him too.

Bless you all!
Julie

[robin]

Julie...is your brother actively attending a support group for recipients or those waiting for a liver or is it online? I've looked for an online forum for recipients and have not found any. There is nothing locally available either so this is where I come for information on hepatitis and transplant. Keep your spirits high...robin

[JulieAnn]

Robin, there's a support group that meets at the hospital where he had his transplant.  He has sat in on a couple of the meetings but said it didn't really help him because it was mostly people waiting for a transplant or people who had just received a transplant.  That's the great benefit of this online group because you get people at all stages, and of course this forum is particularly great for him because it's really about Hep C.  I did some research also to see if there was a Hep C support group in his area but there wasn't anything near him. 

Another good forum where I've also asked questions (and you probably already know about it) is www.transplantbuddies.org.

[robin]

Thanks Julie, I have not found that forum but will go there and check it out. I think that a mentor should be mandatory for your first year, at least. Had I not had Hank around here, I would totally have been lost. When times were hard, it was almost more than I could accept that it would improve as Hank told me. Sure enough it did. Without him, I don't know if I would be here. There were more times than I would like to admit that I considered ending it all because I didn't think I could live with the side effects the rest of my life. Luckily as Hank told me, everything DID get better. Keep your spirits high...robin 

[hanklive39]

 

I apologize for being so scarce lately, it's just that the moving, going through & rewriting curriculum for the courses, getting to know the way the the system @ the college is put together...
Well, let's just say that I've a tad bit kind of busy as of late so, once again I apologize for my tardiness, and hopefully very soon, I'll be able to find more time to participate more often in here

Anywho, gotta run to sleep... sounds very wierd??

Respectfully,
Hank, A.K.A. Henry!!! BTW ,Today is my eleventh anniversary of receiving the gift of life, my liver transplant!!!!!!!!!

[robin]

YOU are the man, Hank. Big congratulations to you and your liver for a happy, long lasting relationship. Keep your spirits high...robin