Disappearing friends

[vltsra]

Anyone else have friends disappear? It's been 2 months since I got together with people I have been good friends with for 25 years over the Christmas holiday, and let them know about my husband's diagnosis. It was a very emotional time for me and I did have a bit of a meltdown. These friends include a woman that I saw through her husband's illness and death, and tried to support others through job losses. I haven't heard from them since, not even an email asking how my husband is doing. Guess I am just venting but wondered if this was something others have experienced.

V

 

[ShiftKicker]

Yes. I've experienced this. I reached out to those who I wanted to try to keep in my life and was very honest with my sadness that we'd not had contact for a while. I updated with where I was at, health wise, let them know I valued their friendship and would love to catch up, and left it at that. I was very heartened that everyone I contacted responded immediately and resumed contact. I initiated this contact because of my experience as mentioned below- sometimes people need an opening to communicate because they just don't know what to do for you. It's not terribly fair, but it's sometimes the case.

To my shame, I've also been that person who drifted away for a time from another friend who was in need. I'm not proud of it- as a matter of fact, my shame was what caused a lack of communication to begin with. A very old friend was experiencing a crisis I had no idea how to "fix". It wasn't my job to fix it or provide advice, but that's how I saw myself. When I didn't know what to do, I felt awkward. When I felt awkward, I procrastinated and didn't call my friend for a few days after our first conversation. When those few days passed, I felt terrible for not calling. The guilt made me question if I should call because I felt my friend was probably upset with me (she was't, but she would have been right to be) and I procrastinated again. I knew I was in the wrong. More days passed, until I felt so guilty I sent her an email apologizing for not being there when she needed my friendship. We had a very good conversation about what she needed from me and carried on as good friends still- though I carry the guilt for letting her down with me still.

Not everyone will be there for you. Not because of you, or your quality of friendship, but because of THEM. They aren't there because they are ill equipped to deal with real hardship in others- either because of selfishness, or, most likely, an inability to know what to do.

I'm very sorry you are affected by this- it's not fair and must be very hurtful.

Fiona

 

[vltsra]

Thanks Fiona for your response. It is hurtful, both to me and my husband, but I'm trying to be understanding. The force of my emotions probably frightened them as does the disease itself. You're right, I've been on the other side and not knowing what to do or say. I have been able to reach out to others and have received support from people I never expected to come through; they've been a blessing to us. My husband and I have both been a bit wrapped up in our sorrow; I'm trying to get us both out and around other people which seems to really help his spirits.

 

[affected]

I like Fiona's strategy. It is a fact that some people will simply disappear, sometimes they are the ones you thought would be the most support. But other people will also appear or step up in your life that will surprise you too.

You can try making fb groups or something similar and asking your friends to join so you can update on things and they may start to chat together that way and figure out how to handle supporting you.

 

[vltsra]

Thanks Tillie. My husband hasn't really wanted me to put anything on FB. I've told my family and some close friends what is going on. I have been trying to reach out to people, and some of his old friends have taken him out to dinner. He has been really down so getting him out to do things has been helpful.

V

 

[Atsugi]

People are afraid, and they don't know what to say. How do you hold a conversation with someone who has ALS? They can't wrap their head around it, so they go away. Even family. Shame.

They're just scared. So you have to be the one to help them get over it.

 

[pittsburghgal]

Yes, I find even family stays away. All of our family (except for my daughter) live far away from us. I get that it scares people and they don't know what to do or say but it makes us feel so completely alone.

Sharon

 

[vltsra]

Thanks Mike, I'm sure you are right.

My family has been great, as has his sister. They let me be as emotional as I need to be, and have been really supportive of my husband. Just wish they weren't 2000 miles away.

V

 

[vltsra]

Thanks for your response Sharon. We don't have kids so it's just the two of us. It is hard that my family is so far away; we were back in Wisconsin earlier in the month and my cousin and sister said they'd like it if we would move there - they aren't scared (at least not yet). We've thought about it, at least part time. Hard to think about moving from San Diego, though, especially since he grew up here.

V

 

[gooseberry]

We found that family and close friends may struggle mightily with the diagnosis. Other friends and coworkers have stepped up

 

[vltsra]

Thanks gooseberry. Guess it is frightening to everyone, including us.

 

[KatB]

V, we moved to Florida 9 years ago, from Ohio. Our siblings, kids, grands & great-grand kids r all North. We have new friends here but with ALS in the mix now for 2 years, it's very time consuming to contact everyone to update them on changes.

I have been using Caring Bridge to post updates and pictures, we invited family and friends that we wanted to share our journey with and they love it. They don't feel like they are bugging us, calling at a bad time etc. It's private or not (your choice), visitors have to create a log in and can be notified when I leave a new post. They can leave encouraging messages, you can message them back, there is a planning schedule if you need assistance for getting to Doctor appointments or need shoppers, friends can volunteer for the task the want to help with.
Sure, not everyone has Internet, so that only leaves you a few to call or write. I found it so easy to copy and paste each entry, print it and pop it in the mail to those few who can't access the Internet.

CaringBridge.org

 

[mpnatx]

Yes, I've experienced this. I thought people might think I was contagious. But, I know they just don't know what to say!

 

[vltsra]

KatB, I've been on CaringBridge for others that have been ill. Guess we aren't ready to do that as my husband is in the very early stages of the disease - probably at a place where others would ignore the symptoms. Just weakness in his left and and atrophy in the hand and forearm.

Mpnatx you have a good point, they probably don't know what to say or are afraid to ask how we are. I was very emotional last time I saw these friends.

V

 

[affected]

V fb is the same - you can create private groups that can't even be seen to exist and just invite people.

But you have to figure out the best way to approach this side of things, in a way that works for you as well as your husband.