Friday, March 11, 2011

A tale of two support boards

After I was originally diagnosed with metastatic breast cancer I joined a support board for young women with breast cancer at all stages. The board has a bunch of sub-boards so that those of us with mets could talk about mets-specific stuff in one place and people could talk about general stuff in another place and so on. Anyone was allowed to post in any sub-board.

There have always been tensions between those who have mets and those who don't on that board. The people with mets felt like boogeymen a lot of the time. They also felt that couldn't be completely honest about treatments or fears because people were already scared of them. And they were frustrated when they did post about how, say, things weren't going well and some well-meaning non-mets person would say "I know you'll beat this!" Once you have mets, you're not going to beat it and so that kind of comment is especially grating.

After a while, I and some other people formed a private support board for young women with breast cancer mets. The private board is a safe, sacred place where anything can be discussed. It's also completely private because only members can read or post there. The board has been very successful; there's so much unconditional love and support there. Even people who don't get along outside the private board don't bring their fights to that board which is not at all the case on the first board.

Belonging to the private board doesn't mean that people can't post to the first board but people who belong to the private board have drifted away from the first board. And why wouldn't they? There are no silly but well-meaning comments, anything at all can be discussed, and no one is afraid of anyone on the private board.

But when private board members go back to the first board, many first board members say that they miss the people on the private board and that they want them to come back. I understand that, and I also know that the first board people want to offer their support and they aren't able to see how misguided some of that support is (even though they feel the same way and make the same comments about people who don't have breast cancer). And I understand that they feel that their support isn't "good enough". I don't know how to reassure them or if it's even possible to give that kind of reassurance.

I'm not sure what to do. I can't make people post on the first board. Should I just stop going there since I end up so frustrated when I do go there? Or is there a way to deal with the people there so that these same issues don't keep coming up and the atmosphere is more welcoming? I'd appreciate any help or advice you have for me.

3 comments:

PussDaddy said...

My advice would be to make a sticky note to stick at the top of the forum page that explains this and then make a thread asking everyone to read it.

PD

The Hyperlexian Aspie said...

to hell with the first board. abandon ship. let them deal with their own issues. that was my bluntly unhelpful advice.

this brings to light an essential problem - people (i.e. non-mets members) need to feel useful and important and helpful. BUT it isn't another person's (i.e. the mets member's) responsibility to reassure the other people in a case like this.

sometimes, there just isn't anything a concerned individual can say to a person in a difficult spot that will be helpful when dealing with tragedy, death, or terminal illness... and i am not sure if there is anything that can ever change that. seems like comforts have to be accepted as given, or instead move on and compartmentalize (as people on the new board have done).

if you feel like it isn't emotionally positive for you to go to the first board, then perhaps it isn't worthwhile to keep going back. on the other hand, if you do still benefit from going there, then perhaps you can think about how to make it tolerable. but from the sound of it, it seems to be unhelpful to go there.

just my $2 (inflation).

love,
vicki

DahliaCactus said...

help, trying to find the private board. Enjoy YSC, but need to support of other stage IV ladies.

can you email me?

bailey.candice@gmail.com