When Friends and Family Abandon You

[Jules A]

I am convinced that we are designed to need others, and that there are no journeys to be taken alone.
Shalom, Suzanne

Perhaps that line of thinking is why so many people falsely believe they aren't "whole" unless they are in a romantic relationship even if it is disrespectful or unsafe.

Although my mother disagrees, about the born alone part lol, I believe we are born alone and die alone. In the meantime I'm making sure I am able to provide for my own needs so I am not dependent on anyone. Companionship is nice but isn't a necessity, imo.

[DianeD]

Feel much the same

Apparently some people cannot cope with the reality of illness. Some people are pretty shallow and others just don't want to know.

I don't have the same situation as you, however I do have a dear friend who seems to not be able to handle the 'new' me. We did a lot together, had a lot of fun, but now I rarely hear from her.

We don't live close any longer and of course that is part of it, but though I've invited this person to come for a visit and even offered to pay the air fare, it doesn't happen.

I know that I don't like having MS and I hate to appear handicapped. Just my own problem with this. I don't want pity. I also find that since I don't appear ill (with the exception of my balance) that people expect me to keep up.

I find it hard to do many things; mostly fatigue gets to me. I also have asthma and chronic bronchitis, so I am often feeling poorly. I tend to react by keeping to myself and I have given up a lot of social interaction.

In your case there is more happening. It would be very hard to have my family behave as yours has. I think part of the problem is that people tend to avoid unpleasantness and I guess that makes MS part of that kind of thinking. They also tend to think other people are interacting with us or maybe they are overwhelmed with their own problems.

Have you tried outright asking for help, companionship, visits, calls, etc. It's a bit humbling, but it gives you an idea of what you can expect.

If family is not going to engage with you or educate theirselves about this disease then turn to people who might be more helpful. Do you have an MS chapter near you? Are you able to get out, even if it's too the library or some other easily accessed place. Can you join a support group? Sometimes MS'ers can connect with others who have similar situations. Once, this site had a lot of members who actually got together.

I guess if the traditional means of socializing don't work for us we just have to find new ways to find connections. I wish you the best.

Diane

[MSLazarus]

I recently posted on this topic on another board:

This is what I posted on Richard Cohen's blog. Fits in well with this discussion.



Linda Lazarus November 16, 2014 at 2:15 pm #

I have thought about this brave/courage issue a lot. My thinking is that people stay away from us because WE ARE NOT GOING TO DIE….GENERALLY, FROM MS.

If people admire us there is no end …they will have to stay involved for years….if we were dying, there would be a limit on time spent caring for us. Since we are not dying, it is easier on others to cast us in a non sympathetic light. I know people will disagree but that is my observation.

[Jules A]

Since we are not dying, it is easier on others to cast us in a non sympathetic light. I know people will disagree but that is my observation.

Interesting point and I think I agree.

Personally I'm much better knowing there is an endpoint. Whether it be someone dying, having an operation, or breaking up with a partner. I'm more likely to engage fully and ride it out when I know its not going to drone on for years and years.

God I hate this disease.

[KatieAgain]

Please understand that this next part is not about lecturing/preaching @/toward you b/c I have been where you are; and truthfully- I have learned much about life and my responsibility in it. The #1 thing that I've learned is that no one is responsible for my happiness other than ME.

You made a fantastic start by divorcing a man who only brought you pain and would have done so, ms or not. I am convinced that we are designed to need others, and that there are no journeys to be taken alone.

Those who have abandoned you, let it be and let it go. Use what energy you have to reach out and connect with others who are worthy of you. Stop viewing yourself as broken- as long as you are breathing you have something to offer, and the capacity to receive. Telling part of your story on this site is a huge step--- you'll never know how many lives you touched by doing so.

Wow, I have more to say but I am sooo exhausted Know that you are not alone unless that's what you choose.

Be Well and feel free to contact me anytime. Shalom, Suzanne

I would be exhausted too if I was you!

I have been divorced for 6 years. My ex was a Schmuck. Plenty of Schmucks and Schmuckettes in this World. Done the husband/kids thing...dont want to repeat. I moved on a long time ago and am doing different adventures.

Thanks for the concern...but I am content and I like myself just the way I am.

[Waydwnsouth1]

I guess I'm one the fortunate ones that have not had anyone avoid me like the plague. In fact I have two service buddies that have come back into my life on a very regular basis. They call or text weekly to check on me and we are planning another get together in the spring. The only local family I have are my sisters and they check on me regularly.

I make it a point not to call them unless something bad has gone wrong. They are always full of questions and eager to learn more.

I don't understand why people avoid those with MS unless it's because of ignorance. By that I mean not knowing about the disease. My wife and sons are constantly watching me any hints of problems. I truly am fortunate.


I feel bad for those who have had family and friends abandon them. It's just not right. Perhaps they should do some role playing and reverse the roles and get a taste of their on medicine. Just my opinion.

[KateA2]

I had about 50% of family and friends bail right after my diagnosis. At the time I was devastated. But, after objectively looking at the people who left, I found they had always been "takers".

They were the kind of people who are black holes, sucking in time, energy, and attention, but never giving back. It took 18 months of CBT to figure things out:

I'd focus on the hard-to-please relationships. chasing the difficult "family" and "friends," looking for affirmation. Thus leaving less for the worthwhile relationships. Well, some people are just selfish. Screw 'em!

Keep your mind active, learn something new and find a way to share -be it an online forum, art, photos, job knowledge, etc.

Start small, perhaps someone will help you host a short movie and goodies evening, or something else low key and easy to do. I do a movie night with Chinese takeout with friends 2'ce a month, or we play a RPG. Nobody is too old for games even when my brain is really slow I can still do apples to apples!

((Hugs)) to everyone.

[dyehard1939]

My family has been in denial for the entire time inspite of flareups and in a power chair for the past 10 years which is ok with me becasue I refuse to be treated as disabled or handicapp. Keeps me independent. They look past the disablitites and look at my strength. 75 years old, three children and five grand children still look to me for support from home repairs etc.

[colobro]

I've read a number of posts in various threads about friends and family essentially abandoning us because of our MS. Honestly, I used to think that this only happens to "other people". But lately I've been waking up to the fact that this is very much alive and well in my life.

Like many of us, I have people in both categories that I simply don't hear from anymore. I'm pretty much homebound so it's difficult to go see anyone. I send emails to people to check in and many times don't receive any kind of response, even when refraining from mentioning MS.

It's made me think that I should probably never mention MS again, because many clearly don't want to hear it. It's also made me wonder how many times I did the same things to others, "pre-MS".

I'm not looking for any solutions, I'm just kind of mini-venting. But it would be informative to hear your stories.

And as has happened in other recent threads, please don't tell me what I'm doing "wrong". I don't think there are any of us on here that want or need that kind of "advice".

I can see that my brother-in-law does not want to talk about his MS and symptoms. And he has said that he has experienced the same thing from both his friends and family. So many were extremely supportive initially. But, as time went on they lost interest.

So, now, after the long haul, it is me and my sister who just stand by him and support him and give his space and rest.

Disease is very difficult for many to deal with - especially for the long term. I wish you the best in understanding when others support you because they just love you.

[Tomjadg]

I don't hold it against people who can't deal with it. I have been friends with a girl for over 30 years, and we ran into her at a restaurant. We just saw her husband at the MRI office, and talked to him.
She was very nice, and said we had to get together. When we left, I told my wife we would never hear from her.. . and we haven't. That was 6 months ago.
My wife, daughter, and brother are very supportive.

[JamCakes]

I find my MS journey to be very isolating. It is a journey for one, after all. I live with someone, but he doesn't understand MS, he's never tried to learn about it, he's never looked it up online or asked questions. I confronted him about this once, he said he expected I would tell him what was important.

He doesn't understand my need to recharge. I work full time, I live like there is nothing wrong with me! Then when I come home, I need to relax and recharge. Sometimes on weekends I need to just sleep all weekend.

How could he understand, I look fine, I try not to complain. I grew up with a chronically ill mother and I hated it, I can't stand saying "I need to lie down" because it's fraught with bad memories of my childhood. *Sigh*

So last weekend we're trying to make dinner, we're both tired and a little snippy, he says something, I say then you make your own dinner I'm tired anyway. He says, I don't know why you're tired, you haven't done anything all day. (This after we had been delivering stuff that he sold to someone, and I had been standing in the sun talking to strangers all day).

Anyway I lost it, and smashed a lamp, and told him I was sick of trying to explain to him that I am not normal I don't have normal energy. I am really tired of it, although there are so many wonderful things about living with him, I am tired (literally) of not getting enough rest and if I don't feel like he truly is supportive--and how could he be? who could be?--I feel like I might be better off on my own.

I try not talk about MS with friends, because I want them to stick around. I try to talk about them, what's going on in their lives? I don't have family members who are supportive, no one is looking things up and helping me make decisions about medication, future, etc. I feel very alone in this, though I do have loved ones around, who do truly love me. They want me to be happy and healthy but they can't do anything for me, they just can't share this journey with me.

[Jules A]

I feel very alone in this, though I do have loved ones around, who do truly love me. They want me to be happy and healthy but they can't do anything for me, they just can't share this journey with me.

I think you hit the nail on the head. It is a journey for one.

No one will be invested in our disease like we are forced to be and your negative experience with your Mother's illness has probably kept your supply of friends and family more robust than if you were complaining all the time.

Hang in there we are here for you!

[JamCakes]

I think you hit the nail on the head. It is a journey for one.

No one will be invested in our disease like we are forced to be and your negative experience with your Mother's illness has probably kept your supply of friends and family more robust than if you were complaining all the time.

Hang in there we are here for you!

Jules, thank you for your note of support! It is so important, the support and knowledge we give and get on these boards.

I see that you and I joined msworld forums at about the same time, but you have been much more active. I check in once every year or two. This current time, I came to tell people about the success I've had with overcoming flushing issues while on Tecfidera. When I do come, I try to give some support and info to others, like I received and still receive every time I come.

Which is maybe related to this thread's topic after all, SEAMSGUY.

thanks again,
Mary