What is "Support" at HW?

Hi Folks:   Yesterday our moderators pointed out that this is a support forum; one of them even suggested that some members may need to get out of Dodge.   Anyway, this got me to thinking about the question of how we define “support”.   My observation over 2+ years is that support at HW is generally given in one of three ways:   1.     Warm and Fuzzy Support.   This is where we give a warm welcome to new members, congratulate people on their results, share condolences on bad reports and wish people well on their upcoming procedures (even if we disagree with their choice).   2.     Academic Support.   This is where we take the time to find and cite research studies that educate members about prostate cancer issues.   Sometimes this support is simply broad based education, sometimes it is used to make a point about a poster’s particular point of view.   3.     Direct Support/Advice.   This is where posters give specific counsel based on their accumulated knowledge of this disease.   This seems to include things like advising people to take their time, to seek multiple opinions, to get a second opinion on their biopsy pathology and sharing an understanding of the side effects of treatment options.   It also includes answering specific questions based on experience, e.g. “where can I get the best deal on ED drugs?” or “how many Depends should I buy?” or “what is the effect of a particular drug?”   And, there are times that comments in this area include advocacy for a particular treatment type, e.g. my bias for radiation or Tony’s bias for surgery.   Rarely does a poster only provide support in one category exclusively but I’m sure that most of us regulars could slot most of us into a predominant type.   For example (and I apologize if I offend anyone here), I think (name omitted) posts a lot in #1 above, while Casey is primarily a #2 poster and JohnT may be our best in category #3.   Anyway, I would contend that HW is a big tent that has room for all three type of “support” if done in a respectful way and within the rules.   Comments or thoughts?   Tudpock (Jim)

Jim,

I would add another "support" that this forum offers ... at least it offers it to me.  It is mental support ... I enjoy coming to the forum and offering an occasional comment.  From the numbers I see for some posters, I guess that other guys also enjoy just hanging out at the site (beats McDonalds!).

Sense of humour and deep sarcasm.  My favourites and I love it Zig!  But.....

Yeah the mental support is about feeling worried scarred or venting but then finding others via HW who feel the same, so even if waht you find here doesn't make you feel 100% okay you at least realise that you are not alone or on your own.

Oh and there is also the support for and from partners.

Alf

Ziggy9 makes an interesting point --- there is a cost to the PCa community in what some might see as being vanilla posts, just as there is a cost in posts which are too aggressive and offend, rather than help.

The question is: Where is the tipping point? And the reality is this isn't a question this forum can deal with. HW is a commercial venture which has both the right, and the obligation, as does any business, to make decisions which will make the most profit (keep it alive) and execute. The owner has made a decision on the tipping point, based presumably on the business plan, which would seek to find the right balance to drive membership and activity. This may, or may not, suit individuals here, but "here" is not their place. It is not my place. It is not the moderator's place. It is the owner's place and it is right and proper he makes the rules.

Frankly, I think the low threshold tipping point which the owner has decided on is a good one for the community. By driving membership and activity the most number of people will be helped in the most acceptable way. If a visitor, or a member, wants a less vanilla, no punches pulled, tough talking, take no prisoners forum, the net is full of them. There is a need for a gentler, nicer, more caring approach and I am very happy there is such a place for me to visit and be a member of.

Sheldon AKA Sleepless

Support: "You may want to do a bit more research before you (enter poster's treatment choice/beliefs here) there are some studies that show (enter data here)

Being a putz: "You are stupid for thinking/dong that, haven't you read (enter data here)"

It's all in how you say it.

i think if you post on a forum like this mainly to "help" others you are on a slippery slope.  the main reason i'm here is to help me.  don't get me wrong, i have plenty of empathy for others and some stories literally bring me to tears.

i think the way we help others is to share our strength and experience, as well as offer encouragement.  i may not say anything for days but that doesn't mean i don't wish the very best for every single person here. 

ed

 

Tud,

I agree with your point that the tent is big enough for your 3 versions of "support" and other definetions as well. I was looking for help/information in #3 and ended up getting that and a whole lot more...some of which I didn't even know I needed.

That said, I have been around long enough to see the more prickly tone that has recently developed and I support the mods all the way on what they feel they need to do to comply with the owners wishes.

For me it's been no problem. There has only been one poster in a year and a half that was way too far out there for me....and he is now blocked. There are a few others that I just don't bother to read....and I'm sure there are folks that tune me out as well. None of that alters the fact that this site remains as an invaluable resource for anyone newly dx'd, grappling with the treatment option or looking for SE advice.

I don't think the ship is that far off course.

Joe

Hi Folks:

Thanks for your responses.  My motive was simply to create a dialogue on the subject of support and generally that was accomplished.  One poster thought I was angry and I have no earthly clue what gave him that impression but whatever.   I have omitted his name from my original post as I had no intention of offending anyone by characterizing my view of where I saw a lot of their postings.  If I inadvertedly offended anyone else, I am sincerely sorry. 

I have not seen where any of the moderators stand on my 3 categories and whether they think any or all of them are appropriate for this forum.  If any of you have time, I would seriously appreciate knowing your opinon.

Tudpock (Jim)

P.S. To Mel and Questions:  I think the issues that came up yesterday were two-fold.  One was a post wherein I probably came on a little too strong in response to clocknut who had criticized one of my posts.  My post was edited my the mods...my first edited post in 2 1/2 years on the site so I hope they don't think I'm a serial offender!  The second issue was a totally different thread where there were a series of highly sarcastic (IMHO) replies to a new member who commented in his posting that he was "comfortable" financially.  If there were other issues I guess I missed them. 

I came here to HW some 18 months ago. I came here looking for answers to questions to understand PCa, to find questions that I did not know to ask and to find information that I could digest that did not take a Medical degree to understand.

I came here and found I was not alone. I found a larger than I expected community of folks who were going through the same crap that I was now going through. I found those that had already been down paths that I had yet to journey and those who had traveled towards the same destination yet took different highways. Yet all were traveling towards the same place; to treat this cancer, to live with this cancer and to somehow find LIFE and PEACE with this cancer.

I found emotional and well meaning support. I found comfort. I found individuals that I could discuss anything with and who could understand things from my point of view that my friends could not. How could my friends understand, "THEY DO NOT HAVE PROSTATE CANCER, THEY DID NOT FEAR THE SIDE EFFECTS OF TREATMENT, THEY HAD NOT THE NEED TO UNDERSTAND THE DISEASE OR THE MYRIAD OF OPTIONS."

I found all of this here.

But I also found bitterness, I found those that had second doubts about how they decided to treat their own disease. Read their words and between the lines and it becomes very obvious. I found those that offered advice and sometimes pointed and specific directions and recommendations as though their name contained MD or some other initials after their name. I found pig-headedness in their staunch support that their answers and solutions were the only ones that had merit. I found those that were rude and self-serving in addressing those that did not agree with their point of view. I found those that could not answer questions posed by talking from only their own experiences, but rather had to call on some one else's experience or study or findings to strengthen their case to the point of acceptance.

I found all of this here.

I have been traveling my own path. I have made my own decisions. After all they ARE MINE to make and mine to accept and mine to live with. I do not need, nor desire, ANYONE to reject my decisions as wrong, as not well thought out, as foolish, or misinformed. These decisions have all been mine and made from my perspective as what is right for me, my family, my circumstances and my life with PCa.

I stay here at HW to attempt to give back to those that follow. I stay here to try to balance the need for emotional support with that of the need to try to understand this disease and how to live with it.

There is absolutely NO ONE HERE that should EVER take anyone to task for their beliefs, their experiences, their decisions, or their attempts to help others. NOT ONE person here has earned this right through education, experience or any other manner.

This site and it's intent does not belong to any of us. We are all here as guests of the owner. We are all here and welcomed to participate within the guidelines as set for by the owner.

We are all here to abide by the covenants of COMMON DECENCY and COURTESY. Just look around you in your everyday lives. We as a society are becoming less courteous to everyone, everyday and in every way.

We say things to one another that we would never think about saying in person. We say things at times that we would not say if we could see the hurt and pain in someone's face at hearing it.

Each and every one of us needs to remember that courtesy and common decency must prevail as we answer the questions asked. As we try to reach out to those that only need the comfort of knowing that they are not alone. As we try very hard to allow some one to feel less pain and anguish about a decision or treatment they have made within the boundaries of their own choice and lives.

This, to me is what Healing Well is all about. This is my understanding of the Goal of Healing Well.

This is what I found here when I came 18 months ago. This is what still exists today.

However, I would also say that there is less of it today than there was. It is absolutely true that there is more rudeness, less courtesy and less emotional support than there was when I found HW.

It is why I remain. I post seldom these days. I read almost daily. I choose not to get involved in the readily apparent battles, self serving debates and diatribe that jumps up on a regular basis.

I remain here to chime in when I clearly recognize that someone needs want I found when I came here. They need to know that they are not alone. They need to know that others have been where they fear they are going and they need to know that they will be all right and able to find life with this disease.

They don't need me to be a doctor. They don't need me to be the ultimate research analyst. They need to know that as a common man and as ignorant of PCa in the beginning as they were, that I have found my way through the journey so far. That I continue to enjoy life. And that I will face other decisions just as they will in the future. And that the ability to deal with them, to separate the wheat from chaff and make decisions withing the framework of their lives is what counts the most.

This is my own personal opinion and observations of HW as I found it, what it is today, and what it is here for.

We are all guests in this man's home. It is his home. And he has graciously opened his doors for all who are lost and looking for comfort and answers. I humbly suggest that we all remember whose house it is and how each of us came to be here in the first place.

Excellent post and opinion, Sonny. You said in much greater detail and more eloquence than I was able to in my response, and did a better job of it. I appreciate not only your answer, but your contributions to HW from the first time you arrived. Proud to call you a friend, for real. Bless you brother.

David in SC

Sheldon:

That was very interesting. I think we agree that profit/non-profit is irrelevent in terms of our needs here.

I just seem to recall that it was stated that this is non-profit. Maybe it was that all profits are put back into this site. I understand your legal distinction.

Mel

I think it was non-prophet.

All wild eyed men stumbling out of the desert need not post here.