Types of responses to me sharing my dx

[MupstateNY]

The ways people have responded to my dx so far:

1. My older son: I assert my right to be in denial.

2. Two neighbors: I know all about ALS.

3. One neighbor: This brings back terrible memories of my maternal grandmother dying of ALS.

4. My younger son: Did not talk; tears streamed down his face; gave me a great hug.

5. Most of the people in my Eurogames club: Pretend they didn't hear my news, but at least they still include me and continue to be friendly.

6. One member of that club: Looked very sorry to hear my news, and said so. He's a smart guy with a lot of general knowledge and I think he understood the dx much better than the others.

7. Another member of that club: Kindly asked a follow-up question, a week after I said we had to go to bed early due to big day at clinic the next day. I was touched.


Weirdest scenario: I invited several neighbors over for a Sunday afternoon get-together, to chat in general and to share my dx. Every time I tried to explain in simple terms what my condition involves, to the 90yo, my other neighbor would interrupt and say, complacently, that he knew all about ALS. (He works in engineering tech.) However, his wife called me later and said how sorry she was to hear the news.

I invite others to compare their experiences.

Sometimes I can tell people matter-of-factly but sometimes I cry and have a hard time speaking intelligibly. When that happens, I wish my spouse would help.

 

[affected]

My pick reaction - #4
that's all that is needed sometimes

 

[Mary2]

Receiving a pretty blue and white crocheted wheel chair blanket from the church. And a bright yellow blanket..
PALS favorite color...from my son. The most well meaning thing is when people say they are available to sit with PALS while I shop. PALS requests something every 15 minutes or so, so they wouldn't be doing all that much sitting!

 

[Tomswife]

My husband's older brother. Said nothing. But he is not a nice person.
My husband's younger brother. Kindness.
The extended family know. But have not reached out.
Of my three sisters, one checks on us often.
My brother also checks in.

But....the kindest and most caring people are neighbors. Acquaintances. A neighbor i hardley knew has been so very caring. She is always checking on us and offering to help. Another neighbor has helped several times lifting tom.

I was baffled by all this. I have realized. How someone acts had nothing to do with their relationship to you....sister, friend, brother, nephew. How someone reacts to your ALS news is driven by who they are and what they are capable of doing and emotionally handling. It's about them. Not you.

Our arms are "too short to box with God ".

Peace.

 

[affected]

It is true that the reactions of others are about them, not you.

Most people I thought I would have relied on ran away fast after diagnosis. Others that were not that close to either of us stepped up in surprising ways.

ALS is a great filter for measuring the grit of people you know.

 

[KimT]

It's tough. It's sad. Family/relatives have said so many things to me. I'm sending you a PM.

 

[Tomswife]

At least 3 people have said they knew someone with als, they died.
Thank you for sharing!

 

[swalker]

The way people responded was mostly positive, with a few exceptions.

My wife, a physical therapist who had treated several ALS patients, was unfortunately very aware of what was coming our way. She has been great. Very supportive. Telling her was hard, but by the time I was diagnosed it was obvious to both of us something serious was going on.

My siblings and their kids all took it with a lot of grief, but have been very supportive.

My friends have all been very supportive and have provided a surprising degree of help. I can't say enough about several members of my church who have provided incredible assistance, including a lawyer who helped me through the initial phases of legal paperwork.

And then, there are some relatives that decided I was faking it. They have been persistent in that belief and have harmed numerous relationships. It does not bother me much, because I don't care what others think. But it has had a great impact on others.


Steve

 

[MupstateNY]

Sorry to hear about the exceptions, Steve. Jeez.

You were brave to go through your evaluations on your own.

 

[Nikki J]

Here is a study on stigma associated with diagnoses of ALS and PMA

Stigma experienced by ALS/PMA patients and their caregivers: a mixed-methods study

Objective: Previous work suggests that stigma negatively impacts quality of life in people living with amyotrophic lateral sclerosis (ALS) and progressive muscular atrophy (PMA). This study aimed t...

www.tandfonline.com

 

[Doing My Best]

Friends and family have been very supportive and eager to help. I wasn't sure what to expect but we haven't felt excluded - friends kept inviting us to social events until it became impossible for Steve to enter their non-accessible homes, and now we try to host occasional potluck events at our house instead. Steve has two guy friends each of whom comes to visit one afternoon a week, just to chat and hang out, which is a break for me and fun for Steve. Our two out-of-town adult kids have weekly long phone chats or Zoom calls with him, and our youngest has deferred his post-college launch onto his own path to keep living with us to help out. To say we feel lucky is an understatement.

I did have one co-worker who helpfully recounted to me a disturbing end-of-life story about her cousin's PALS husband, which I unfortunately still have to chase out of my head now and then. It amazes me what some people think is appropriate to say.