[Ragnar]

Originally Posted by v5118lKftfk

Hello,

I have been wondering if there is a danger that actively participating in a health forum over time can actually skew one's perception of how dire the situation could be for a prognosis.

In a nutshell, the majority of the posts are going to be from people who really have it tough or from people who are in a phase when they are really finding it difficult.

I know people do share success stories and stay to help others (which is important and really wonderful) but for the most part people are the most motivated to post when they need help. Once the situation isn't as bad then they happily move on with life. I doubt if people post "I am having a great day today" as much as they post their questions and frustrations.

For example, for many people chemo-induced neuropathy goes away. However, I bet those people have more posts asking about their concerns than later coming back and reporting that their neuropathy has gone away ... they have probably moved on and are off enjoying themselves rather than writing about enjoying themselves.

I am not criticizing health forums in any way. I just raise this point because it might be important to remind ourselves of this bias as we form overall impressions in the back of our minds about our condition while participating in health forums.

Any thoughts?

You may be correct, I am new here and have a pretty scary MRI; yet I am fairly optimistic about the future. I am not getting a lot of feedback, lol.

[mrsD]

Originally Posted by Ragnar

You may be correct, I am new here and have a pretty scary MRI; yet I am fairly optimistic about the future. I am not getting a lot of feedback, lol.

Please remember this is a peer support group... posters expecting a diagnosis/prognosis really will not find those details.
We have a few people here familiar with MRI jargon, etc, but not many.

Secondly, if a poster has an unusual condition, where not many people receive that unusual diagnosis, there won't be many responses here.

When posting it is best to put a good keyword into the title of your posts...this is then picked up by the automated bots and then appears in Google, Bing or whatever searches. Many people come here thru searches that way.

For the most part, I think most posters leave after a while, for whatever reason. It takes a strong person to read about other people's pain and misery, and remain strong themselves. Misery compounds the reader's own pain, in many cases. This is why you find many off topic posts on our forums, as a relief and safety valve for reading depressing painful struggles all day long. I feel this especially because I don't just read PN forum, I read ALL the forums!

[v5118lKftfk]

Thanks for all your thoughts. It just occurred to me that this might be a topic worth posting for people to keep in mind.

Mrs D .... I think everyone is eternally gratefully for all your work. There are a lot of people who are much better off because of your help.