Compassion from members?

vhrichard

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Hello. I get it - either we are dying or our beloved friend and family member... so there is little compassion left to go around; but I read such hurtful, almost mean remarks on here to so many unsuspecting posters. Is this a reflection of the times we live in or just this site. We are a unique club, I get that... but why have a support website only to post such nasty responses to people’s questions. Enter at your own Risk should be the sites name. I’m sure I’m asking for a good scolding with this post, but truly it hurts me and mt PAL was embarrassed at the postings and very turned off by the mean spirited answers, so much so that she could not seek support here. We all need compassion, even those who may never be diagnosed with MND or ALS. “ What the heck is going on here?” I guess I should go elsewhere.. for support. Please consider addressing the tone to posters on this site or have an auto-response- but a compassionate one for people not yet diagnosed.
 

KarenNWendyn

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Hello vhrichard. I’m sorry you have found some comments on this forum to lack compassion.

Your point, however, is well taken. Compassion is always appropriate, especially when we are dealing with such an awful situation as ALS or the fear of it. I believe most members here show great compassion. I find that even when we are at a loss for words, we can always be kind.

Occasionally in the DIHALS forum, responses sometimes take on a blunter tone. Keep in mind that this is a forum for those with ALS and their caregivers, not a health anxiety support group or diagnosis by collective survey tool.

Sometimes, DIHALS posters keep coming back, despite the information and reassurance forum members have tried to provide, and our subsequent responses may seem sharp. It's not the job of people with ALS to hand hold strangers on the internet.
 

Ken15

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I must say I have spent negligible time in the DIHALS section of this forum, though I have glanced there occasionally from the "New Posts" section.

In skimming some of the posts in DIHALS, I haven't run into any nasty replies; however, I have noticed some posters come back time and again repetitively asking if their symptoms mean they have ALS.

Asking for a diagnosis online (even with some very knowledgeable people on this forum) is an invitation for misinformation, confusion and even greater anxiety. I'd go so far as to suggest that DIHALS could be renamed to "do I have symptoms of ALS" - DIHSALS. ALS is relatively rare among the general population and only an appropriately trained neurologist (or two) can tell you if you have ALS.

As for other sections of this forum (CALS, Newly Diagnosed, General Discussion on ALS, etc.), I have been lurking/learning (and more recently, posting) in those sections since Jan, 2018 and cannot recall a single incident of nastiness.

What I have seen in these sections, time and time again, is compassion, education, advice and, of course, HUGS :smile:.

My advice to you, vhrichard, is to try out the sections noted above, use the search function to find topics already covered, and subscribe to topics that are of interest - there is a lot of good information here.

Ken
 

Atsugi

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I think VNRICHARD's point that some posts are not compassionate is true. I know I'm guilty of telling a persistent DIHALS to get off.

Remember that posts stay forever, so we get to (have to?) read what was posted years ago. And there was a time here when I must agree a few folks were pretty nasty, I think 2012 or thereabouts.

KEN has a good idea for VNRichard--look around outside the DIHALS area and use the search function.
 

Clearwater AL

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Ok here goes… I’ve been in trouble before. :)

Over the years the Forum has registered 38,641 members, of course
thousands have moved on.

Too often today organizations, businesses, are forced to accommodate
or respond because of the opinion of just one, two or a few against
a well working majority.

Maybe from the replies above to Vhrichards Thread, Vhrichard has a
better understanding of the DIHALS sub-Forum and at a few times,
the Newly Diagnosed sub-Forum.

For me, over just the past few years, I recall maybe one other Thread
like Vhrichard’s. I wondered if it was a DIHALS’er who got dismissed
or their Thread was forced to be closed. And that one was a year or
more ago.

The DIHALS sub-Forum has the most "Viewing", often two and three
times more than any other sub-Forum to include “General Discussion
About ALS/MND”… just as it is. Yes, sometimes it may get “lively”.
The “Viewing” goes up.

In the (beginning) of most DIHALS threads I see a lot of understanding.
But… as the thread goes on with understanding, very knowledgeable
explanation replies and countless times the poster is referred to…

“Important: READ BEFORE POSTING! Answers to common concerns
about possible symptoms!”

it all appears to have fallen on deaf ears. Well, today I guess blind eye
with monitors, Ipads and phones and the new electronic age.

The no ALS… health anxiety ridden and maybe just a taunting thread
rambles onto it’s second, third and occasionally a fourth page.

Then there’s the ones who want to challenge the very knowledgeable
replies of explanation by referring to replies from previous DIHALS
threads in the weakness vs failure, early twitches vs denervation
reinnervation fasciculation and or EMGs reports to bolster their
belief they have ALS.

Or… those who are just skillfully taunting that sub-Forum until their
thread is finally closed. Some weird sense of accomplishment maybe
they share with others. (My opinion.)

Finally, those who may realistically have a disease but refuse to accept
it is not ALS, almost trying to convince us (and themselves) it’s got to be
ALS.

It gets to a point… stern, direct, blunt, uncompassionate replies follow.
Maybe this offends one or two.
 
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KarenNWendyn

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Over 38,000 members — wow!

It boils down to not being able to please all the people all the time.

I think most of us here really do try to put our best foot forward. Considering we are under enormous stress, either dealing with MND ourselves, caring for one who is, or trying to cope after losing a loved one— the forum works pretty well and is generally tactful, kind, and empathic.

Even though there will always be the occasional post that is less than compassionate, or the occasional reader who is put off, for the most part I think we all do a pretty good job.
 
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