enduring well meaning friends, family, and strangers

[Kristina1]

I was having a great morning with my husband, when we stopped at the pharmacy to pick up a prescription for my daughter. The pharmacist came all the way out of their area to come over and touch my arm and ask me how I'm doing. She looked like she felt so bad for me. I have never mentioned my diagnosis at my pharmacy but obviously they figured it out from the riluzole they've been specially ordering for me every month. I know she meant well but it took me from enjoying my day and feeling normal to remembering that I'm sick with a fatal disease.

I feel like these unwelcome intrusions come all the time from everyone. Even, like in this case, people I don't know well and who I never told about my diagnosis. Sometimes I want to go along on an errand with my husband just to get out of the house, but I realize that if I do I will have to answer "how are you feeling?/ is there anything we can do..?" questions and it just takes the wind out of my sails and I decide to stay home instead.

Does anyone else feel this way? I'm pretty open online but in real life I'm a very private person and somewhat introverted and it is intensely uncomfortable for me to handle this constant social focus on my situation.

 

[Nikki J]

I do understand what you mean. It bothers me less than you but I usually answer the initial how are you doing? As if they just said hi how are you? I say I 'm fine how are you? They usually say good thanks and draw breath for the what can I do how are you really but I start talking about something else which makes it hard for them to switch back. I know you are bulbar so it would be harder but maybe your husband can jump in too

Everyone really does mean well of course

 

[affected]

Yep Chris found that a lot and being bulbar onset he couldn't hide it. As he had owned a cafe he was very well known in our small city.

One day he went to town and ended up with a ring of women around him literally wailing. As he also had emotional lability he started laughing, while inside he was anything but laughing. He came home quite distressed and I am sure it was part of what made him really withdraw inside himself.

People mean well, but they are actually trying to make themselves feel better.

 

[mpnatx]

I know what you mean. I'm introverted and private also. I haven't shared my diagnosis with anyone except for close friends and family.
Like Nikki said, People ask me how I am, I say fine, how are you? And that's usually the end of it.

The people who do know, ask me how I'm doing or just don't bring it up. I think some are uncomfortable and don't know what to say. Some, I haven't heard from since the diagnosis. Maybe it's me!
Either way, it is what it is!

 

[Jocalyn8]

Tillie,
You are right. They want to make themselves feel better. I do not blame them it is what it is.

ALS Sucks.

 

[KarenNWendyn]

I’m also introverted. However I’m actually quite fascinated by and aware of people’s reactions to me. Some people say nothing— presumably they don’t know what to say or are afraid of saying the wrong thing. I agree most people who ask are trying to make themselves feel better, like they’re checking off a box on their to do list for how to deal with an ill friend/ acquaintance.

Depending on the day and how introverted one is feeling, here are some possible answers (listed in order of increasing pathos and detail):

1) Fine (though someone once told me fine stands for F**ked up, Insecure, Neurotic, and Emotional)
2) I’m doing ok
3) hanging in there
4) Fairly well, all considering
5) Tired
6) I’ve been better
7) It’s a progressive disease
8) Legs are getting weaker, speech is getting more difficult, hands getting less dexterous, etc., etc.

 

[LizF]

I'm fairly private, and introverted, but I'm a writer and have found that putting it all out there in my blog has helped me cope. And somehow, that's spilled over into my off-line life. So, when I get the questions, no matter how sombre they're delivered, I answer cheerily "I'm fine, thanks for asking! How are you?" just as if there wasn't anything wrong.

 

[Lkaibel]

We have dealt with this in different als and handled if differently each time, depending on mood. Tillie is spot on about people wanting to make themselves feel better. Brian, being a sweetheart feels bad for people who are uncomfortable but he can’t even stand when people see him with the walker and give him “ the look”. He does not like to go out because he says at home he can be himself but out he is “an invalid”.

 

[KimT]

Well, I seem to have the opposite problem. I'm very extraverted and even though all my relatives and friends know my diagnosis, I rarely get any "how are you?" Many of my friends hid after they heard. My relatives, except for my 81-year old brother and his wife, have stopped calling. I have no CALS, just a good friend who is a housemate. The people who do call and come around basically want to use me as a sounding board for their problems. I've had two friends tell me they think THEY might have ALS because their back, leg, tongue, etc. HURT.

I recognize I've brought this on myself by always being the go to person. I wish I had all the money I've spent on these relatives and friends because I could afford a round-the-clock caregiver/cook/maid for several years. I am not exaggerating. Sometimes I dread it when the phone rings because it's usually a computer question, a financial question, or just a ***** session. The latest is a husband who constantly complains about his wife. I've known them both for over 20 years and this just started when they retired and figured out they need to live separate lives to be happy.

Last week I was told I needed to travel more. I have Meniere's Disease as well as ALS, so the ENT/neuro says and I haven't been able to go on a cruise for over 15 years. When I fly, the motion sickness is horrible. I traveled a lot when I was in my 20s and 30s and, even then, I only liked it when I could go somewhere to scuba dive and swim on a tropical island.

Last year two mutual friends came over for about two hours. An hour and 45 minutes were spent with them telling me all the adventures they were having and how healthy they were. I had to make the visit count for something so I spent the last 15 minutes giving them some recipes and helping them lower their auto insurance.

Kristina, I understand your point of view but I'd give anything to have someone hug me and ask me how I was doing. I drove an hour to pick up my brother and his wife from the airport today and she said something like she can't believe how much better I'm walking and that she thinks maybe the "ALS will leave my body."

Sorry for the rant. Each day I have to adjust my attitude and be positive. I've decided I need to make new friends who don't know me as a professional and a problem solver. I started going to two card games, one here in the condo and another in another community. So far it is working. I even found a woman who was interested in caregiving and only charges $10 an hour. She has experience with MS, stroke victims, and Alzheimer's so it could work out for me later on. She lives in my building. She said her last client had her on call 24/7 as well as working 12-hour shifts, 4 days a week.

I'm going to shut up now.

 

[Vincent]

I have an Uncle who phones once a week to complain about his problems. I usually laugh. My answer to how are you is AWESOME. I 'm 3 years into this beast and I can still do most of what I did before. Any day on the green side of the grass is a good one. I could mope around though I can't see it doing any good.
Vincent

 

[Kristina1]

Kim, I am so sorry, that's terrible, and I'm furious on your behalf that those around you have been so insensitive.

Tillie I have the same problem with PBA. Even when I've explained it to people they have a hard time not taking the laughing/crying as true emotion and it's humiliating at times. One of my triggers is when a situation is tense. When my husband gets angry I often get triggered and cannot stop laughing. Even though he knows I am feeling absolutely ZERO amusement he still gets a bit offended by it as though I am laughing at him. I really wish I had better control of it. Nuedexta helps a little but not enough.

 

[Gorby]

I hate "how are you feeling?" from acquaintances. Just adding the word "feeling" to the greeting "how are you" changes everything for me.

 

[laurel]

I'm getting mixed up about what we friends of PALS should say on greeting/contact. I have always understood that many with terminal/life threatening conditions feel abandoned by friends and often family. I usually say "hi, how are things, is there something I can do for you? Like made a dinner, cut your lawn etc. " but that sounds like it is unwanted because it makes the PALS feel conspicuous and pitied. I have to say I have never asked how someone is to make myself feel better. I'm not sure that is why we ask. I ask because I know things stink and they may need some real help. Help me out here as I really want to do the right thing.

 

[Nikki J]

I think that the relationship makes a difference Laurel. Kristina was speaking of someone who was not a friend and had not been told she has ALS. The pharmacist knew because she fills her meds.

If you have a relationship where the PALS has confided the diagnosis and you have followed their progress and given or offered concrete help that is really different. There might be times when they don't want to talk even to you but I think you would take their cues

 

[affected]

Definitely the OP was about someone that is not a friend, and this is a big difference. I can see replies slowly morphing as this thread goes along, but it's not about people you know as such.

I think that when someone is a friend they will ask not only how you are, but how they can get involved. They won't just walk up and do this in a public setting however.