should I tell my friends that I have ALS?

[Filmmaker]

Hi everyone

I turned 32 a couple of weeks ago. A lot of my friends sent me messages wishing me happy birthday and all that... The problem is my friends don't even know that i have ALS (they haven't seen me in person for almost a year as i am now staying with my parents in morocco and they are mostly in Paris and Montreal. I can't imagine telling them by email that I am actually dying and that i was hiding this terrible disease that i can't hide anymore. I don't know what to tell them, i miss them sooo much but i am afraid they will get terrified or be sorry for me or not even know what to say and I can't face this, it would probably take too much of my energy knowing that I don't have much left.
What do you think I should do?
I would actually love to see them one more time before I'm not part of this world anymore but it would be a terrible shock for them which I don't want to create...
What do you think I should do? Thank you so much for your help!

 

[Al]

I would say rather than e-mail telephone them. If you want to see them I would go as soon as possible. You really have no idea how long before you won't be able to travel. You could phone one friend and asked him to pass on your message this would make it easier on you.

AL

 

[rcharlton]

I found it a lot easier when people knew about my diagnosis but, as Al also suggested, I would not recommend that you do it yourself. Pick a couple of friends or family members to get the word out on your behalf. It makes it easier for everyone.

This will give everyone a chance to educate themselves and process the information. It will minimize the stupid uncomfortable questions when you next speak with them.

Good luck

 

[Anja]

real friends will support you! if i were ur friend i'd want to know! Imagine the sadness ur friends would have once you left this place and they not knowing what happend... You could invite your friends to come to you so you can talk in person. Tell them it is very important. Would that be an option? Of course it will br a shock, so it was 4 you, sharing a shock makes it easier to handle! Take care!

 

[KissJ]

I agree that you should call them! Also, I agree that IF they are really friends, they will be there for you! Best Wishes! God Bless.

 

[vzandt]

Total agreement with Ania. I would want to know. I would be very sad if my friends didnt trust me enough to tell me. and yes I would be sad to hear the news to, but I would still want to know.

 

[Ms. Pie]

I agree as well. My friends are God Sent. Warm wishes for your comfort.

 

[cervus]

I think you should tell them too. Take care. Yasmin

 

[Filmmaker]

Thank you everyone for your advice, i will try to find the best way to let at least 2 or 3 know so they can tell others Thank you very much for your support!

 

[Poet Chistopher Robin]

They'll certainly notice a lot of differences in your physical appearance as also when the effective muscles set in, so I would say yes

It varies in a lot of folk but is extremely easily noticeable in me today since nov 2009

 

[HelenL]

I personally found it too difficult to tell people in person, including my own family... they all knew something was going on, so I wrote up a very factual email (no self pity, which would have been too hard in person), and sent it to them all at the same time. I did put in the title that it was not good news or something like that so they could be prepared a little.

Whatever way you choose, you'll never know the good wishes and support you'll get from your friends if you continue to keep it from them. Wishing you good luck, and that your progression slows down.

 

[hjlindley]

I told everyone who loves me, even my ex-husband with my husband's urging. My friends have seen me through 3 surgiers, only to watch the dominance hand wither and loose function. They would all notice that their friend with the shoe addiction is in old lady shoes. But telling them now, however you choose, I think is the best thing.


Good luck...c'est tres difficile!

 

[momap53]

Please give your friends the option to provide some support for you and your family. I like the idea of telling a few at first and let them help you with the others.

 

[Magpuff]

I sent a detailed typed letter to friends and family explaining the tests I went through and the diagnosis I received. I also told them my spirit was good and that we were handling things one day at a time.

The response was wonderful. They had the chance to do a little research and everyone either sent a card or phoned. Many were ready to assist whenever needed.

You will need all these people in some way......even if they can just put a smile on your face or make you laugh.

 

[Miss]

My husband had me tell most people since it was hard for him to get it out without getting emotional. He was with me when I did, though. I agree the idea that you could tell someone from each of your friends sets to be the one to tell. I also agree with Al that you should try to travel to each place while you can. Good luck to you.