Telling friends I have ALS?

[bob_s]

Months ago, my pcp (primary care physician) recommended that I tell old friends that I have ALS. I have put this off because I don’t know how to handle it. I find it awkward. This is a monster disease, and I’m progressing fairly quickly. Would it be better to let them remember me, if they do, when I was healthy?

My pcp says that I should give my friends an opportunity to connect, visit, whatever while I’m still able. She suggested mailing a written letter which they could choose to ignore. (Some live far away.) So they wouldn’t feel obligated to send "condolences." But she says this is for my friends as well as for me.

Has anybody dealt with something like this?

What do you think of this idea? Is it good or bad?

How would I write such a letter? I trust my pcp and can see her point that some friends might want to connect while I’m alive rather than finding out after. But I am very uncertain as to how to approach telling them.

Bob

 

[lgelb]

After years of my husband's not wanting to, we finally did it for some long-distance friends at Xmas with the usual sort of catch-up letter, not that we'd ever written one before. Part of it read, "As some of you know..." and then was factual with the diagnosed. It continued, "Since ALS doesn't last forever, we hope that some of you will make it to Seattle...beautiful in the spring..." etc.

That way, if someone is cued and wants to show, great, if not, s/he had the chance. For friends that are closer, instead of the travelogue, you could just say something like wanted you to know and hope to see you this spring, or whatever. We did get some people after that staying closer in touch.

If you want more specific wording help, I write for a living so just ping me.

 

[marypat]

i wrote a letter to people who had a fund raiser for us. very hard to do but in it i said if it (ALS) makes us feel powerless, at least we have the clinical trials and the ALS walk to feel like we’re fighting it. We have learned that the people who are part of our lives also want a way to fight with us and for us. Your friends some will want to know and some will not but give them a choice and a chance.

 

[ottawa girl]

As it turned out, my diagnosis was about 2 months before the local ALS Walk.

Yep, I informed most of my friends by way of an email together with an ALS walk pledge sheet.

Three things happened:

I was relieved to get it out there.
I was happy and grateful for the heartfelt support.
We raised $10k in a week!

That, my friend, is a silver lining!

 

[SMP51]

Bob it is a difficult task. but you will be glad you did it. My husband and I handled things differently. I called some of my friends, he emailed most of his. I think most friends that we grow apart from because of busy lives or distance still carry love for us. Think about those you have and how you feel about them, how when you do reconnect it is as that long time apart never happened.
They all handle it differently. My husband has a closed but now distant friend, Christmas card contact now mostly friend, who has now asked to come visit.
I have a dear friend who lives far away that I called and she had to get off the phone, she took 3 weeks to gather herself and get back with me but had changed her summer plans so her daughter could come see her uncle Stevie before he was too ill.
And then we have friends who express concern and caring when they see me .... but cant bring them selves to come by, when they say thye will I know they mean it. It makes me sad for them and him that they don't.

 

[dbltree]

I was reluctant to tell friends thinking that they might abandon me, however the opposite has been the case and they call frequently to check on me. We just talk about the things we always have and I appreciate their support.

 

[hjlindley]

I'm extremely glad I've told all of my friends. I think it is incumbent upon us as patients to educate people about the disease. I know I have friends and family visiting in the next few months motivated by the knowledge that I don't have normal life expectancy. We didn't cause this and we should not be ashamed of it. You may be surprised as to the assistance, support, and love you get from your oldest friends. But the decision is certainly personal one, so good luck.
Holly

 

[pearshoot]

diagnosed feb/2010 walk to defeat als 2010. sent out 90 letters to family and friends requesting sponsorship also describing als and how it was affecting me, my list now over 150 and each year a letter goes out so everyone is following my progress. in retail business for almost three years after diagnosed so all of our customers followed progress. have no problem talking to strangers about the disease . it is our responsibility to educate the public. my goal is for the public to know what als is like they know what cancer is

 

[momap53]

I'm always up for educating folks, even strangers when they have a questioning look about my condition.
Some friends just can't handle it and others go out of their way to stay in touch or help out.
Give them the opportunity to connect .

 

[bob_s]

Thank you all for the wonderful responses and advice. You have helped through what had seemed a tough decision. But now I have a better idea what do.

My wife and I were also worrying over whether to host our traditional gathering of extended family from all over the country for Easter this year. I'm going down hill more quickly after a bad fall last month. But after thinking all this over, last night we decided to go ahead with the Easter gathering, even though we aren't sure how many will come.

Bob

 

[ottawa girl]

Thank you all for the wonderful responses and advice. You have helped through what had seemed a tough decision. But now I have a better idea what do.

My wife and I were also worrying over whether to host our traditional gathering of extended family from all over the country for Easter this year. I'm going down hill more quickly after a bad fall last month. But after thinking all this over, last night we decided to go ahead with the Easter gathering, even though we aren't sure how many will come.

Bob

That's great news. Yes, the party should go on! You won't be sorry. Get yourself an Easter bonnet and you'll be all set!

 

[marypat]

bob enjoy your easter gathering! it will be worth it

 

[momap53]

:lolarty on!:lol::lol::lol:

 

[Cricket]

Wonderful! Wishing you and your loved ones awesome easter-chocolate-egg-hunting weather!

 

[notme]

I'd sure go on with the party, too!

Your friends may not react how you expect--some won't be able to cope--but most will. Your family, obviously, loves you--and you'll be well enough for Easter to enjoy them!

Hope you all have a blast.

I'm with the "letter' crowd for letting friends far away know. They can decide for themselves whether to come visit or make contact. Just remind them that you are still YOU--with or without ALS.