What do you say when...

[prometheus]

. . . someone asks what is going on, you tell them... and they say "I'm sorry".

I have not been able to come up with an adequate response to this. It seems that no matter what I say it always comes out sounding either very cheesy or just superficial.

Any suggestions?

[olly]

that is a hard one,i try to avoid any questions from people as i fully dont understand the answers.
but if people ask how i am i just say "i'm plodding along" or "i'm still going".
it is a bit awkward when people ask and the way they react , to say there sorry is the usual responce and im sure we would react in the same way,it is something you try to deal with.

[crystalkk]

I usually say I'm hanging in there.

[sharonca]

Prometheus -

Are you referring to the first question? - from someone who hasn't seen you since diagnosis?

I too have problems with this quesion. If I know them well I tell them either the short or long version and then comes the audible grasp and then the I'm sorry. I'm sure I would do the same. If I don't know the person well I say I have a neurological disorder and let it go at that.

Sharonca

[prometheus]

Thanks olly & crystalkk...

sharonca, yes... it is usually the first time I've seen them since things started going wacky with the legs. I do the same thing. I start with the basics ("I have a neurological disorder") and if they ask more questions then I tell them more. Once you start though, it almost always turns into a long story. I should just memorize the spiel. If I don't know the person i also keep it simple.

[quadbliss]

Of coarse everyone is different, but I would be tempted to say something like: "We are all given unique challenges in life. This just happens to be mine."

Mike

[Barbie4]

Most people don't know what to say to someone who has been diagnosed with ALS (or any other disease for that matter) They mean well in their response, but sometimes it is uncomfortable for everyone. I would just say, thank you for caring.
Most people are sincere, when they say they are sorry, they truly are sorry for what you are going through.

my thoughts anyhow.

Barbie :)

[prometheus]

I agree that most, if not all people mean well. I can hardly blame them. I would probably say the same thing. I certainly don't feel offended when they say they're sorry. I have just always struggled with what to say in response to that and you have all given me some good suggestions.

The first time someone said they were sorry I just said "me too".. then I felt like an idiot. So the next time I simply said, "I'll be okay"... then I thought this was a bit dishonest because the truth is, I don't know that to be the case. I've managed a slew of other foolish responses as well... none of them seeming to be appropriate to acknowledge their concern and address the facts.

Thanks for all the suggestions. If you think of any more please let me know!

[cajuntexusa]

My husband was approached by our neighbor yesterday and he said (my husband suffering from ALS, "I don't look the same, I feel the same and they moved onto another topic of cutting down a tree in our front yard". He won't discuss his illness with anyone except our immediate family.

Everyone is looking for the right words and the right words will not come. I would tell people that I am suffering from an illness and ask for their support and understanding.

[liz]

Along the lines of what Mike said.......when people are persistent, I often just say "yes well, everybody's eventually got to get something and this is what I got". Then I ask them how they're doing. That moves the conversation along.

[Xtina1217]

I can't really say anything from the side of someone who has ALS, but I am asked the same question when anyone ever asks what is going on with my dad. He was mr. fix it always doing something physical until he was diagnosed in december, and now, just 4 monthes later he's completely wheelchair bound, and can barely move his hands... so I guess I understand the whole "I'm sorry" responce. I usually just respond with something like "Well all we can do is make the best of the situation" also I use this to reccommend visitation to my father saying that we are just trying to enjoy the time we have here, and he really loves those little visits from friends and family.

I hope that was helpful!

[Omar]

So far I am dealing with the situation the same as Sharonca and Liz.
But I have also noticed that lots of people hesitate to ask to avoid disturbing
so I try to be more open about the situation.
I guess lots of people do care but simply they don't know how to deal with it.

[CindyM]

I work in an atmosphere where the grape vine sends gossip-true or otherwize- faster than CNN. Plus some of my co-workers know my family, so the opportunhity for mis-information is ripe. I tell it all, as much as anyone appears to want to hear. THey might still screw it up but it will not be for lack of information on my part, LOL.

[lola64]

oh my goodness, can I ever relate to this thread!!:D

To keep it simple, (I can always tell when the conversation turns and when the questions start coming!) whenever someone asks about Dad and how he's doing, I usually just (flinch a little on the inside because I never know how to answer it honestly), 'he's fighting! keeping a stiff upper lip!' or something equally as cheesy in a quick as possible, one line answer that keeps me from getting too emotional.. sometimes, of course, if you hit me at a rough moment, my eyes still well up and I have to choke back a few words. That usually gets the message across better than words, however!:)

(Jeepers! I must be delirious from lack of sleep! I'm actually laughing at myself here. A hard balance between caretaker and daily work life. Oh my, we all find our ways to cope!)

I find the HARDEST thing to hear, is when someone doesn't understand what it is that is happening, says 'well, I hope he gets better soon!' AARRRGH! I KNOW they mean nothing but the best and they don't know any better, but REALLy it is like salt in the wound for me. Also, I know people mean the best, but the daily 'how's your dad doing?' question every DAY or every time someone sees me, also kills me. Sometimes if I am away from Dad for a few hours, I am trying my hardest to give my brain a little break from all the clutter ALS causes inside me. It's hard to be reminded of it in even the split second I might be able to give myself a break from it, when it is ALWAYS with you.
Anyhow, I hope some of you can relate, and maybe can get a little chuckle from me just jotting it all down into words!

But on a positive note, despite all the bleakness that the disease provides at times, when you have an enlightening moment, do any of you just feel like you just don't have any time to 'suffer fools'? Someone said this to me recently, and it was the most perfect phrase to put into words how I felt. I just don't have the time or patience for petty things that just don't matter in life anymore. Seeing what I see each day with ALS, makes me hold certain aspects of life and relations in a whole new light. As much as I despise the journey we're undergoing at times, I really feel as if there is something enlightening that is happening to me. And I personally am just a mediocre- spiritual person at best. I accept God. But sometimes I still question...

[geehdee]

I am always straightforward in my reply. I say I have ALS or Lou Gerhig's disease. If they ask about the disease I tell them what I know. If they ask if it's terminal, I say it is but not for a while. If they say they are sorry, I thank them. Some people ask how I am every single day. Some people have avoided me since the word went out about my dx.

[MtPockets]

I posted this a long time ago on one of my not so good days:
Fact verses fiction:

THOUGHT: Sure I'm dying but everything is fine, wonderful, just great how about you. Ever feel like asking someone that? Don't answer.

I know how you feel. We all go through this. Some get mad at the world, God, friends, family , everybody and just make themselves a pain in the butt basically. You get to chose how YOU will react.

I usually try to put on my "I'm ok your ok face" when around others. I try as much as possible considering all that may be happening to have a positive approach and outlook to live every day to it's fullest. And it's amazing how many people believe I'm doing great, when inside I'm ????. It changes all the time. Some days I do not know from one minute to the next how I'm dealing with this, it's overwhelming.

I do that mostly to help my loved ones, to be a source of hope for others, yet like tonight I can't sleep because of pain, spasms, and having a pity party, but no one came to the party.

Well maybe God. I think he understands when I get in these moods, swings, bad times, and just have to let it out and vent. I laid in bed crying for awhile, but could not sleep so got online instead.

But somewhere deep in my heart I know God loves me and you, and this will work out, I will make it through with God's help and strength. After it is all over I will be with him forever, no pain, no fears, no mood swings, no spasms, no pills, finally complete PEACE, believe me it will be worth it all, to finally see my lost loved ones and walk in the presence of Jesus Christ.

That is my rock that I hold onto, to get thru the lows, and to make me truly believe I WILL BE ALRIGHT THIS DAY. Not tomorrow, next week, next month, just this day.

I can only live ONE DAY at a time and make the absolute most of that day to help myself and others. There is no second trip around. This is it folks.

Do you have anything to use as your rock? Your strength? To get you through this.

Have you given thought to how God fits into your life? Now might be a very good time. You have some time left to consider it, before it's too late. Please, I'm serious, God really does love you and He said if anyone comes to me I will in no way cast them out. I respect your choice, but remember you will live with it forever.

I feel your pain, may God Bless and keep you.
AL

[CindyM]

I think I am guilty of asking too much, myself. I have a friend who's wife is dying of Cancer and I ask about her every time I see him. I'm genuinely concerned for them, and don't want him to feel alone...Maybe there are better ways to show we care. I'll have to think on it.

[dona jean]

i either tell them that i am still taking up space how 'bout you...which usually maks folks laugh, or i say it is what it is...i can generally tell who really wants to know and who is asking just to ask but really doesn't want to hear the whole story. keep it simple,and blow it off to those who don'treally care or are too ignorant to want to really care...if thaty makes sense.
dona

[MtPockets]

Depending on my mood, I sometimes tell them, "It's better than pushing up daises."
Or, "I'm still alive, which beats the alternative."

[Peg B]

Hi,

I hope this is the right thread to post this on. I don't get "I'm sorry," from three of my family members (Two sibs and a niece). Instead I get "Oh, I think I have what you have," Look at my hand it cramps sometimes." Incredulously, I say to myself What? and nod my head.

If I say ALS is very rare and MMN or even rarer, I am setting myself up for a debate, as the three family members love to play, " I have such big problems but aren't I funny and brave, and you could never have as many problems as me." This is why two of my sibs never ask about how I am feeling without immediately spinning into how they are. I call and ask them, let them talk and let go. So I do not talk about it, which is hard sometimes. The third sib, tells me how I need to sleep, exercise as much as possible and eat right as she does. (DUH!!) If I only knew it was so easy. I think she thinks this is secretly my fault. As she has fought her cancer so well. (10 year suvivor). So I guess I am just venting. The two sibs I had that died were on the same wave length as me and we could talk straight about anything, (we were from Venis, sort of speak), the three I have left are from Mars, sort of speak. I was very close to the other two, and since I saw all three of the ones left last weekend I am feeling very lonely. My husband and daughters cannot really fell the void. It's not the same.

It is nice to vent. Thanks. Sincerely, Peg

[Bobby C]

What I say is that I have a type of motor neuron disease. If they do not know what it is, then I tell them it is a cousin to ALS. Then I say that we take life as it comes, and we will keep up with our activities (we are avid sports fans) until I drop. One nice lady, when my wife explained my PMA diagnosis asked "is it just luck of the draw." Well, its not luck, but just a "bad break" as Lou Gehrig explained. But I wish good luck to all and God's blessings.

[CindyM]

Hi Peg- you are right on target when you mention how lonely all this can make us feel. I think our kids and spouses have their own issues/fears about losing someone they love. But siblings and other relatives and friends should be a soruce of support.

Not many folks know how to support someone, though. I once read a great article about the 10 things NOT to say when someone has terrible news or feels awful.
The mistakes listed were very common, when I can find them, I'll list them. Not that we can do much to educate others on how to respond, but at least we can not create their mistakes and at least we can know they probably justg do not know what NOT to say!

[CindyM]

OK. I just googled the article but cannot find it. It was titled, "Other than that, Mrs. Linclon, how did you like the play?" Cute title. Anyway here are at least eight poor responses that I can remember from it:

"I know what you are going through."
"The same thing happened to someone I know."
“How do you think I feel? I had ____ happen to me." (Followed by a long discourse on how bad their life is.)
“Maybe you should…” (followed by advice)
“This is God’s plan for you…” (Also often followed by advice.)
"There are a lot of people worse off than you."
“You don't 'look' sick."
"At least you are not in pain."I am sure there are lots more. Any submissions, everybody?

[paula-jane]

Yep... how about "I have something to cure her!"

Mum had a friend who moved away a few years ago, but, their children came round to play with friends on the street on a fairly regular basis. Naturally, they reported to their parent's that my mum was really sick and in a wheelchair. Fast forward six months and there is a knock on the door et voila! There is said friend demanding to be let in to see my mum... our caregiver let him have a two minute visit with my mum as she was too upset to see him any longer. Next, I get a phone call from said friend, who is sympathetic, but thinks he has the perfect cure for what ails her. He has just started a new business and he has pills!!!! These pills will cure her!!! I listened patiently and then explained that mum has ALS and that before he continues to upset everyone he should google up ALS on the internet and then give me a call. He called back to say sorry.

Yeah, it's really tough to know what to say...

[Peg B]

Dear Dear Cindy,

You somehow have perfect understanding. I never heard the Mrs. Lincoln one before, but talk about LOL. I sure did LOL. The rest was perfect. It made me feel much better.

You made my day. I am going out with my long time friends, college roomates 39+ years ago and I will ask them. Laughter is good.

Paula Jane. I think you were very gracious in your handling of the friend. You helped them get smart, protected you and your family without meaness. That's the best way I think. God Bless you both well. Peg

p.s. I am still laughing.

[MtPockets]

What a classic line, "Other than that, Mrs. Lincoln, how did you like the play?"
:-D:-D:-D

I love it.

[CindyM]

I laughed too, AL. Paula-Jane: what a great idea, to tell well-meaning know-it-alls to google a defination. Solves more than one problem at a time, I'd say! :-D

[stilljoyful]

I say:
We all have to deal with the hand we're dealt.

[jimercat]

I hadn't read this thread in a while, but loved paula-janes response!

i think there should be t-shirts made that read:

"Google This: ALS

It's what I have - what have you got?"

:twisted:

[jrienecker]

For a very long time I wasn't able to honestly tell people how my father was doing. I would say "he's hanging in there", when all I really wanted to say is, "he's dying. What do you think?"

People who don't have experience with ALS (and even all of us, before we were affected by the disease), don't know how to act around someone who is paralyzed by ALS. It is a gruesome and uncomfortable disease for people to see at times, and I think that being honest is your only option. If they say they are sorry it's because they are sympathetic and don't know how else to be supportive - and that's totally fine!

When someone says "I'm sorry", maybe you could mention the ALS Association local chapter and ask them to donate or mention some fund raisers they can help out with. Then "I'm sorry" turns into, "I'm sorry and I'm helping", which is ultimately what I think people want to do - help out!