Who is most likely to use bc online support

[Unregistered]

I recently read the results of an online research study concerning online support groups. It claimed that those who participate in online bc support groups are those who have the most strong family/friend support at home. I found that interesting since it seems the very reason we often go to online support is because family and friends are not in the bc soap box. I know that many of us share things that we wouldn't dare to share with friends that don't have bc. In fact, I am afraid to share with non-bc friends many of my problems and fears related to bc, fearing I may loose those friendships. Maybe I feel this way because I did loose some friends following my diagnosis all because I came down with breast cancer. I guess for some Cancer was just too much for them to handle. So this is a big part of the reason I do go to online support, not because of great family/friend support but due to lack of it. Do others agree with me or this study? Thanks for the input.

PS Sorry that I lost the abstract to the study and there is none posted here.

[Lyn]

Hi there, it is not that we don't have support at home or with our friends, it is that we get first hand knowledge of what works and doesn't work, then we are able to give our family and friends hope, yes we are the ones who worry about everyone else. I got to the stage after doing this continually, and I mean non stop since 1998 that I don't bother telling people I have a new one to chase, check out operators, say how has your day been? how are you today, I usually say brilliant, that stops them dead in their tracks, they are taught to ask these questions, they are supposed to serve customers efficiently, they really don't want me to start or they will never close their check out. It is true we do tell our fellow forum family things we don't feel we can share at home, even sometimes some nice things but also shed a lot of tears, say a lot of prayers and send positive energy and encouragement. Unless the person doing the report has BC themself they are not able to walk a day in our shoes. I gave up going in public looking all nice and well just so it would not upset anyone, now I don't care how I look, as long as I am not showing any embarassing parts, that use to include my very protruding port a cath, no I havn't lost my self esteem just don't use as much energy anymore trying to make other people feel comfortable, and that has taken me up until last year to make that decision.

Love & Hugs

[Unregistered]

"it is not that we don't have support at home or with our friends, it is that we get first hand knowledge of what works and doesn't work, then we are able to give our family and friends hope, yes we are the ones who worry about everyone else."

I agree with this totally Lynn and thanks for stating my case clearer. I think your right it is not that we don't have family friend support it is that we don't want to stress them with the bc any further but give them HOPE. Thanks for sharing and hitting the hammer on the nail so to speak. I respect your comments and insights on this topic from a person with such longevity with dealing with this disease and the issues surrounding it. Take care, hugs as well.

[Alice]

I think Lyn was right on with her post. I tried to explain to a friend that she couldn't see life from my perspective nor could I see it from hers that having cancer put a whole different spin on even the smallest things.She just couldn't get it.I also think the fact that many that go to these support groups are the ones that have support at home because you have to be able to reach out to people in your personal life in a similar way.The people that don't make and maintain personal relatioships are also going to find it hard to reach out to strangers and therefor don't join the groups.By the way my friend and I have agreed to disagree and are still good friends.

Alice

[MCS]

You are all very right!!

Some of us have family support
and friends
and caregivers
and coworkers

But you know how sometimes, they don't really understand, or they get tired of hearing the same fears, or questioning the doctor, or don't have any ifnormation

We need this web site to do all of this. I have given up on discussing certain topics at home. They just can't deal with them

XO to all

MCS (Maria)

[Unregistered]

I agree as well. I do have wonderful family support but don't like to stress them out by continually talking about things. I come here for the companionship. It is like joining a club where you really belong....like minds. I also come because I think what I learn here will save my life. How do you say thank you to all of you for that!!!

Cathya

[Unregistered]

Sorry...forgot to login. I keep getting logged out as I move around the site. Must be doing something wrong....lol

Cathya

[Maggie]

Ladies, what wonderful replies. I, too agree with you all.

I remember my family, especially my daughter, telling me to please call her ASAP when I found out the final results. I can still hear her sobbing and it broke my heart. I don't want to hear that again. My husband and sons were upset too, but didn't give that same reaction. I know they all talked among themselves.

I keep most things to myself now and share my fears with my husband and sometimes one of my friends. To the rest of the world, "I'm fine!"

We all need someone to share our fears with and who could be better than the knowledgable women and men on this board. I thank you all for helping me understand my cancer these last 9 or so months. I did not post for a long time but I sure was lurking! ;)