How did you tell everyone?

[Bestfriends14]

I apologise if my question comes off a bit silly, but my PALS and I haven't told anyone, outside of immediate people in our life, about his diagnosis. My husband has a large network of friends he sees only occasionally and instead of telling the story again and again, we were thinking of posting something on FB. To me it seems a little tacky, but I honestly do not know how else to reach a large audience all at once. Continuously having to tell our story is so exhausting.

How did others do it? Any advice? I'm bummed just thinking of it.

 

[Atsugi]

OK. I'll answer, but it's not good. These are just my own observations.

For these reasons, I don't recommend broadcasting.

- Many people, including family, will avoid you after they know. People will say they'll help, then they won't. The pew around you at church will get a lot more free space.

- Employers will begin by being supportive, but eventually your desk will move closer to the door.

So I'm in favor of telling the kid's teachers and grandparents, and let it ooze out from there as needed.

Don't put it on the Internet, because the insurance man and the bank certainly don't need to know. But the EMTs at the local fire station can be your best friends if you train them to handle a paralyzed person.

INSTEAD of telling the story until you're exhausted, just don't. How's your spouse? Fine, thanks.

 

[swalker]

I can't answer from a CALS perspective, but will do so from a PALS perspective.

To start with, I am a very private person. Much more so than most folks.

At first I was very, very reserved. I told my wife, my pastor, my close family members, and my business partners, in that order, over a period of weeks.

I pretty much tried to hide it from others.

I did gradually start opening up to others.

When I stopped working (shortly after diagnosis), I told those that I had worked with a bit about what was going on. When I started using a wheelchair, I started telling more folks.

Now, I tell anyone that inquires. I have realized that I have nothing to hide. Sharing with others provides an opportunity for them to help in small and large ways.

I do everything I can and post stories about my adventures. Well-meaning folks have cautioned me that I should not do so because they fear an insurance company could suspect I am not disabled. Right. I think even the slightest of investigation would reveal that I am truly disabled. One of my goals is to be the most positive influence on others that I can and sharing my adventures is a big part of that (in my mind).

My friends and family have not left me. In fact, many of those relationships have grown deeper and richer. I know that I am blessed in this regard. Others here have reported that even seemingly good friends and family have responded to the news by backing out of the picture.

Steve

 

[lgelb]

Not silly at all, Calgary.

I agree with Steve more than Mike on this one given your circumstances. A simple factual post that he has been diagnosed with ALS, that you two continue to value your friendships and will be as socially active as you can, that you welcome visitors (until you don't) and happy Wednesday, hope everyone's having a great day or however you sign off...I don't see the harm.

Yes, some people may bolt. Better to know early than have expectations they don't meet. Some will step up -- why not be able to benefit from that, too?

Insurance is governed under the terms of a policy, and I'm not sure why anyone at your bank would be on your FB anyway, or what import that would have if they were. If you had a loan, it also would be under prespecified terms.

As for employers, they will do what they will do. My husband had a generally-fatal and definitely disabling illness all his life, and my employers became aware of that, for sure, in the pre-HIPAA era since he was my insurance dependent, and I worked in health care so hardly a secret anywhere. If they want you to work there, they do. If not, any pretext will do.

Do what feels right. You can save a draft post in FB, sleep on it, and go from there.

Best,
Laurie

 

[diagnosed2016]

I still haven't told everyone and it's going on a year and half from diagnosis. For me, finding an opportunity to work the subject into conversation is an issue- often im with our kids, or with friends who also have small kids and the timing is just really awkward to spring news of a terminal illness. For some friends I wrote an email- while I'm fine to discuss on a day to day basis what is going on, it remains difficult and emotional for me to have the initial, big picture, long term discussion.
Expanding on what Mike said, I find there's a certain peace to having a group of friends or acquaintances who know nothing about my situation, and being able to somewhat step out of it for a time. When I am with people who know, I feel like it's always in the air, in the room, on everyone's minds.

 

[WendyWooG]

I found telling people really difficult it upset them and I didn't like doing that. We told close family and friends and encouraged them to spread the word. I explained that I was finding it difficult and could they tell people for me, they were happy to do so.

I did have a couple of people distance themselves because they felt uncomfortable this included family, but I had far more people step up and be lovely and a few very casual friendships have developed into very close special ones. My daughter is away this week and I have carers coming in, when you are totally dependant it can make you feel a bit vulnerable. Charli put on Facebook that she would be away and I have had unexpected visitors every day which is so lovely. So social media does have its uses, I have found that if you are honest and ask nicely for help people do step up. A lot of the time they get uncomfortable because they don't know what to do.

In all this you are the important one so tell people in a way that makes things easier for you. Letters email Facebook or face to face really doesn't matter, what matters is removing any stress from you. Look after yourself first the people that will matter to you will understand.

Wendy

 

[Firefighter58]

I don't feel that you want to make a production of it, if your husband has a large network of friends the word will quickly spread on its own.
Al

 

[Bestfriends14]

Thank you to you all for your replies. We decided to just rip off the bandaid and put a brief, informational bit on ALS and how hubby has been diagnosed. We put it out on FB because we both have a small (ish) network on FB and his larger network is work related.

We thought we could separate the personal and work world by divulging to just the personal for now. His immediate work colleagues know, and for those on the fringes, I'm sure the news will filter to them at some point. His walking is getting so bad that we can no longer keep saying "we don't know what's going on", as now he's using his cane.

We've had some lovely, supportive messages since posting and for those scared away by the news, we'd rather find out now than later down the road.

Thanks again everyone.

J

 

[Nikki J]

However you choose, give some thought to how to answer " how can I help". It is true that some of these people don't mean it but some do.

It may be the answer right now is we don't need anything right now except your friendship which we value more than ever. Let's get together and do x. It might be a thought though also to say in the future we will need some practical help and we have set up a lotsahelpinghands.com account. May we add you? You can explain various tasks will be posted that people can pick and choose what they can do. No obligation to do any but if they wanted to help there would be a variety of things eventually like an errand, a ride, a meal, a home repair or task - If you catch people at the beginning it is easier

 

[mommychops]

when i had to tell people about my son's (PALS) situation, i said "i need to tell you something, but please do not ask me about it. i can't bear it." they've all been wonderful. "just remember we're here" my PALS has a private group on facebook, and he shares with a select few.
i still cannot bear it if someone says 'how's he doing?' no no no.
also, this website has been extremely helpful.

 

[lgelb]

My response to "how's he doing?" was often a terse "It's a progressive disease." People get it after a while.

If that sounds short, it goes back to prioritizing what you need to do, which generally does not include coddling the clueless.

 

[KateEmerson]

I, too, got very stressed and emotional when people asked " how's he doing ? ". The first year I could only talk to close family members and one friend about it. As time went on I found the best answer for me was " as good as he can be".

 

[lgelb]

Yup, that was my fallback.