When to tell

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Mtzu

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Joined
Oct 24, 2014
Messages
186
Reason
PALS
Diagnosis
04/2015
Country
US
State
California
City
Los Angeles
I know at some point it will be very obvious that I have something very wrong going on. For the time being it is mostly my hands that are affected so I'm able to get by in most situations without people noticing. We've told our closest friends but have not gone public.

Also, we've still not told my mother. She is taking care of my father who has severe dementia and recently learned she's loosing her eyesight. I don't want to add to her stress but don't know if hiding this is good either.

Any advise on how or when to put it out there? Are there any advantages to doing so earlier than later? It's all so uncomfortable for us.

The bottom line is, I'm in no way objective and am questioning my every move.

Thanks,

Michael
 
Doing it early avoids the "why did you wait so long to tell me"?
 
Michael,

This is just my opinion and what "I" would do. Until there is a breakthrough in the world of medicine, we are on borrowed time. I am sure you can attest that since your diagnosis, you (and your CALS) are doing the best to make the most of each and every day. Well those closest to us and especially our family need to be able to do the same. Keeping your diagnosis from them is (again only my opinion) not fair to them. They need to have the ability to make each moment with you just as special as you want to make with them. Also, they will need time to grieve and come to an acceptance as we have had to do. Once they do, they will want to be there for you and you need to let them be there for you in whatever way they can.

Don't wait until it becomes "obvious" to those around you. You are still pretty functional and you want to make the most of this time and share with those who love you.

Vince
 
This is a very personal decision. At first, I was very secretive about it and ask my CAL to not volunteer my ALS to anyone but family.
I still haven't told my neighbors, they deserve to know because I don't talk to any of them anymore.
My advice is to let all family and friends know, they need and deserve to know.
One thing is for sure, it will spread like wildfire whether you like it or not.
 
It is personal for sure but telling those who are important to you early is helpful to all I think. If they don't know there will be things that are puzzling to them and possibly hurtful. For more distant people it is up to you but you will get support from unexpected sources and sadly, perhaps experience the reverse
 
Unless you think your mom is going to die before your symptoms are apparent, I would go ahead and tell her. otherwise she may feel hurt by the lack of info. it is going to hurt no matter when you tell her... :'(
 
It is a personal thing. Everyone will know it, sooner or later. My spouse was somewhat secretive but over a couple of months we got the word out. It was the best thing for us.
 
My husband also did not want to tell anyone at first. It seemed that the question of going public because a bigger issue the longer we avoided it. It's difficult, but it was a big relief to me to have it out. You are affected, and people close to you will know it and wonder why.

It's not easy to tell people. I used Facebook in order to get the word out and not have to go through the telling over and over.

My advice, if you are up to it, is to go public and be done with it. Nikki is right, you need to be prepared for some surprising responses (or lack thereof). Most people won't know what to say or how to respond, so if you know how you'd like them to treat you (as they always have, give prayers, stay in your life) you might just let them know up front.

I'm so sorry you have to go through this...
 
It is a personal decision and I had to face one similar regarding family. Our son was moving to Texas and we were having a party of that Thursday. I was diagnosed on Tuesday. I wanted to wait and not cast a pall over the celebration of their upcoming move. My wife encouraged me to share it because she said they would have been crushed that we withheld that information from them. The party was good as life moves ahead regardless. It was right for us to tell them.

Doug
 
I think often CALS want to tell before PALS. For CALS it can seem like some support to tell family and close friends but to PALS it can feel like it's cementing the diagnosis too quickly.

I do think that if you wait too long those close people feel they knew something was up and would have wanted to know earlier.

Still the actual timing is so personal. We found that after you had told a few it became slightly easier ...

Another thing is that sometimes you just don't want to have to handle the reactions of others, you are having enough of a time handling your own!
 
Btw, be prepared for a great deal of ignorance, many people have absolutely no clue when you say "als".
There are even Docs who don't understand what als is.
 
Working in the rehab business it was kind of hard to hide that I had something going on. And I also belong to the Knights of Columbus where I am reasonably well known. My thinking was in order to stay ahead of the rumor mill to tell everyone all at once in a large group so everyone had the same information. It made things a lot easier in my case.
Vincent
 
First of all so sorry you're here and having to face this.

Here was the thought process I had and how I went about it.

Obviously first was Vicky (actually she was there for it all) but after her;

There were certain people close who would (and did) notice any display - I told them ASAP and kept them up on things. (Golfing Buddies and other friends I spent a lot of time around)

Then there were people who were close but a lack of proximity would prevent them from noticing - I told them next (My Brother and out of town friends)

Next were people whose emotionality or other circumstances would be better served by a timed and individual approach - I told them as circumstances allowed (My Daughter who was just coming up on review for a promotion at a new job after a couple of years of tough times - She didn't need the news on the eve of that happening)

There's people I still haven't told. One is my Mother just for the simple fact that her memory is really starting to go so why force her to go through being told multiple times. She find out in a couple of weeks when we visit Texas.

Finally there's people I'll never tell for no particular reason other than I just don't feel I owe it to them. They can find out through the grapevine....

That's what helped me go about it.
 
Michael, would it be easier for an immediate family member to tell your mum just before you see her? She may take it in better, be more 'ready' to talk it through properly with you.
My gosh, whatever way you go about it...you are in my prayers.
God bless, Janelle x
 
I want to thank everyone that responded. It's amazing that so much experience, insight and wisdom can be found in one place. There are so many ideas and ways of thinking about this process that had not occurred to me yet. This will certainly help me formulate a strategy moving forward with this conversation.

One reason this is so hard for me is that I've been the rescuer my whole life. I've been a lifeguard, combat medic, ski patroler and still serve with the Coast Guard Auxilliary (not much longer I'm sure). What I don't know how to do is ask for help. In my mind, I'm supposed to be there for others, not the other way around. I'm still pretty functional but feel like a huge, immense burden. And, I know it's only going to get worse. The only two people I've been able to tell so far are my brothers. Some of our closest friends know because my partner, Andrea, told them. I want her to have her support network in place.

Sorry about the rant. I guess having people to communicate with can be a bit cathartic. And, asking for help here is good practice. Again, thank you. Your ideas are outstanding and very much appreciated.

Michael
 
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