Harsh Tones

[TNTTony7]

I have noticed a tendency for some senior members to speak harshly to new people coming into our community. I just want to remind some of how they felt when the dreaded word ALS came into play. Confused, panic, anger all sorts of emotions went through me. Then I settled in and wanted to know all about this dreadful disease. If I had been treated as some treat the new arrivals, I would've left and been alone without this forum's support. I understand and agree there are some who come here with a chip on their shoulders and honestly act like they want to be diagnosed with it. I do agree that harsh tones are needed for these types. But as in one case this person was just truly concerned and was seeking support. 99% of us react with care and concern, and there are just a few that treat others hostile. So please let's just do a self-check and ensure that we treat those coming here with the respect that they give us. If they write harshly them by all means respond with the same. But if not them treat them with care.



Thank you, Tony


P.S. I may be overstepping my bounds here, but I felt compelled to say something. I hope the right people read this and self check and correct this attitude.

 

[Miss]

I think you are definitely right about the harsh tones. Personally, I keep away from the Do I Have ALS Forum. Right now, I don't have anything to offer. I'm too caught up in the day to day caregiving and feel like that is where I can be most supportive. I'm afraid I might sound harsh to those that are questioning. Hopefully, I'll get past this and be more receptive in the future. For those that feel hostile, maybe the best thing to do is pull back from that forum for now.

 

[Al]

I find the people who get hostile usually after repeatedly answering the same questions from someone who JUST WON'T LISTEN! You people know who you are. Please listen when we say we think you don't have ALS. You'll get nicer replies.

AL.

 

[TNTTony7]

I fully understand the frustration of that, better not to even reply.........in that case. Just move on instead of insulting, they are still human and do deserve a level of respect! Put yourself in their shoes they know something is wrong with them and have no answers! Not knowing what is wrong is very frustrating. A young nephew of mine is going through that with his lungs. I also have a sister that is losing her cognitive abilities with no explanation as to why. My point is some people will latch on to something out of frustration and they should not be mocked for that, talked to straight yes and then move on...........is that so hard?

 

[kmendsley]

Tony,
You are correct that it is difficult to deal with such words as ALS and then go somewhere for support and not find what you are looking for. I had my own 'rough' journey into the forum as I was told stop for being stupid and that I didn't follow things to a tea just because I was young and that was not the norm. I was devastated and left the forum for almost a year until I was diagnosed the 3rd time with ALS. I gave it one more chance and found to not only be accepted but also to be checked in on by friends in the forrum and find multitudes of advice. I hate to say you have to be in it, in order to receive that respect, but in SOME members minds that is how they feel. Also you have to keep in mind that the most senior members are trying to answer many blogs in a day for people who are scared they have als when there is no reason for them to feel this way when they have one symptom. Sometimes, it is just their personality. I try my best as a new member, and just being me, that I am kind and try to quiet the fears in a nice way. Some members are just going to be blunt...that is just who they are and they may just be quite bitter of their diagnosis...I know I have my days of bitterness...wouldn't you? Anyway, I hope you still do find support and welcoming words as you go through the hard process. My best advice for you though and anyone else looking for support Before being diagnosed is to look elsewhere and then comeback. It is just too hard for PALS and CALS members to even phathom people thinking of this diagnosis when they are not even close to being diagnosed....losing their life through worrying ... in other words. Best of luck to you.
Kell

 

[Ms. Kat]

I'm a brand new member to this forum, and am already quite surprised at the unkindness shown on this topic in response to genuine questions from people worried about the possibility of having ALS. It's almost as if the people who have ALS are proud of it, and don't want to share it with someone who only FEARS they have it. Doctors make mistakes or overlook things -- I lost both of my parents due to complications of medical errors. This happens all the time, not because doctors are incompetent, but because they are people, and people make mistakes. Likewise, many non-medical people are perfectly capable of doing excellent internet research and are able to come to well-informed conclusions regarding the possibility of an ALS diagnosis. Why scoff at this? And why should it be the responsibility of people on this forum to make light of, even ridicule, someone's deep fears? I would hope to find kindness and caring here.

 

[olly]

i feel the same tony and have said so before.
i stopped posting on that part of the forum because i got so stressed.
you do get some who are so annoying and wont listen,you can spot the hysterical ones after a couple of posts............i just dont reply to these ones.
however,we do get genuine ones asking for advice and there treated like they too are overreacting.
there met with sarcastic and rude comments which is totally out of order.
this is a growing concern as i have noticed many newcomers start off there first post by saying they are nervous about posting due to harsh replies.
it would be so sad for genuine people looking in deciding not to join because of this and ending up being left out of what is mostly a loving caring family forum

 

[catcaniac]

Let's just say that there are a few members on here that I would be terrified to meet in real life. It would be good to stick with the old motto, "If you can't say something good, don't say anything at all." It is almost as if a few members on this forum get off on telling others how stupid and insignificant they are. It doesn't matter if people don't have this disease and maybe they suffer from attention seeking behavior and in that case, the best thing to do is nicely state the facts and then stop giving them the attention. The worst thing is these folks seem compelled to frequent the exact place that new people are looking for help. That said, I am not one who is easily scared off and have stuck with the forum long enough to know that the overwhelming majority of members are helpful and caring people. I am glad we already had our diagnosis when I came to the forum or I may have never been back. Thanks to those who deal with newcomers with care and consideration.

 

[Bad Balance]

I am sorry, but I think that there is quite a difference between someone that is diagnosed with ALS and someone who comes here for nuerotic attention. Those with an actual diagnosis always get a warm welcome.

I try to stay away from the "Do I have ALS" area, because many of those visiting fall into the later category.

 

[Zaphoon]

Well, shucks!

I've banished the trolls to an undisclosed, hidden cave to never be seen again.

I will no longer post in the "Do I have ALS?" forum (if I can help it).

Odds are, the answer is "no" anyway...

 

[olly]

yes we do get neurotic ones,you are going to get them but we do have people with genuine concerns who are going through the diognostic process..............seems lately everyone is treated as a bad apple.
its not what some people say but the way they say it............sometimes i cringe at the responses and i feel ashamed as a forum member.
theres nothing wrong in a bit of courtesy!

 

[ZenArcher]

I used to post quite a bit in that portion of the forum. Now for the exact reasons Al mentions I don't even read it. For those with legitimate issues sorry but others have ruined it for me.

 

[Katie C]

I learned early on to stay away from the "Do I have..." forum. Even if it was just a couple that were going to rile me up, I can find extra anxiety on my own!

 

[Northern Dancer]

Why no mature, seasoned responses to the young and frightened? Being a senior in all senses of the word is to take responsibility, to mentor and to offer perspective.

Obsessively responding over and over until you have lost all patience and then have to resort to name calling is as 'neurotic' as those that are being put down. It is selfish and cruel. And I don't know why it is tolerated.

 

[TNTTony7]

I totally agree, northern dancer. I do my best not to go there, because I am impatient by nature. But every now and then a post will catch my eye.