Why people go away...

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rogeriopaguilar

Active member
Joined
Aug 5, 2014
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58
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Other
Diagnosis
10/2015
Country
BR
State
São Paulo
City
Guarulhos
I know it is hard to see people suffering but since the beginning of my symptoms I saw that the majority of people just vanished. People I thought were my friends just don't talk anymore even to say "Hello" when I'm on-line. I don't understand this. Today I'm fully functional. I'm loosing my abilities in a daily basis. I don't know if it is ALS but is something neuromuscular. I know that when the time comes people will help me but wouldn't be better to be with me while I am somehow "normal"? Why wait to see what happens and avoid me in the most difficult time of my life? I simply don't understand. Even some relatives acts like this and this just makes me suffer more. It appears that people prefer to stay away of home as much as they can just not to see my decline happening. Sometimes this hurts more than the symptoms themselves.
I'm sorry to post this here. I think I'm just thinking loud here...
 
Totally understand going through the same issues
 
Agreed. Some ppl stayed away once Hayden got sick. Said it was too hard, they didn't want to see him like that, etc. Well me neither! And I don't think he was particularly enjoying it neither! But damned if it wouldn't have been 110% for all involved to spend as much time with him when you could have. It wasn't easy but we made memories I will cherish til my dying day and wouldn't give up a minute of that time!
 
P.s apparently I've moved to the "anger stage " of grief : /
 
You dont have to be a rocket scientist to figure that a disease like this brings out the true meaning of what people are at their core no excuses
 
It's simple. Most people are incredibly uncomfortable, don't know what to say, so they withdraw away, back into their comfort zone. Everybody says they'll help, but few actually do.
 
I have people who don't come around, it hurts, especially since I was the weekend babysitter for so long. I think they don't want the kids to get too attached. I understand but it still hurts, I can't talk anymore so I gave up trying to see nieces and nephews, too young to understand, my only grandson is 12 and he understands and is not afraid.

janie
 
I understand exactly what you mean. We have some friends and family that continue to drop by, share jokes with my PALS through email, etc. And then there are others who stopped contact gradually. And yes, I understand it is a comfort zone issue for most people, as I am a reserved/shy person myself.

As a CALS, I have told myself when this ALS journey is over, I am going to take extra effort to visit any and all relatives and friends who may get diagnosed with serious afflictions, and help them and their caregivers as much as I can.
 
I'm sorry to post this here. I think I'm just thinking loud here...

I am SO sorry to hear that is happening to you! To have this crappy disease and then on top of it to have friends or family react that way.

Don't be sorry to post that here. That is what this forum is about. Support... We all stand with you in this.

I have sensed one of my daughters pulling away. I think she just can't handle it. I pray for her. It is VERY hard for her to cope with me having this disease.

You have friends here!

Lynne
 
I so understand. There were so many people visiting in the beginning. As my pals ALS progressed, less people started visiting. The last 6 months of his life - hardly anyone came by. The couldn't bare to see him "like that". I watched it 24/7. He was at a point his last 3 months, HE didn't want anyone to see him. Bedridden, peg, vent, and unable to speak, literally trapped in his own body. So sad.

Debbie
 
The same thing happened when my mom battled cancer. People disappeared like she didn't exist. It hurt her.
 
It does seem to be a common reaction, whether the person is suffering from ALS, Cancer or Health Anxiety.

It does seem though, that if they are suffering from health anxiety, often it is that healthy people just can't get into the constant conversations about what is thought to be wrong this time.

I have witnessed that myself, it is very hard to sit and listen, even to someone you love, imagine they have terrible diseases, especially when they won't listen to what is truly wrong with them.

I've certainly weeded out my 'friends and relations' during the time Chris was ill. Or should I say, they weeded themselves out ...
 
Combine that with the fact that society in general has become so much more narcistic than even ten years ago. Even in the scriptures it states that in the end times people will become "lovers of themselves."
 
I have had the opposite happen/ people just can't seem to do enough for us
 
It's simple. Most people are incredibly uncomfortable, don't know what to say, so they withdraw away, back into their comfort zone. Everybody says they'll help, but few actually do.


Worse then that is my buddy, friend, companion since his birth, my 12 yrs old grandson will not see me. my deterioration is shocking.
;( Mike :mad:
 
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