More comfortable around others who have ms.

[roxy118]

As my Ms is slowly transitioning to secondary progressive, I find myself feeling mor comfortable. My friends are kind and supportive but this feeling has become more of a reality. I’m feeling guilty. Is anyone going through this? Thanks Roxy

[KoKo]

Hey roxy!

If I understand you correctly, you are uncomfortable when among your regular friends?

I think I do get what you're saying.

Early on after my dx with MS, my interactions with friends pretty much stayed the same for the first several years.

But as the years went by with MS progression, I didn't maintain many of the friendships.

This was mostly due to my not being able to participate in various outings, or not feeling up to the challenges.

You hear all the time the saying "you're still you"!

The truth is that fatigue, sensory overload, anxiety about bladder and bowel issues, difficulty walking, numb and weak hands, etc were not a part of who I used to be, but are a part of who I am now.

In any case, I do keep in touch with just a few close friends, but no more tennis, bowling, playing cards, going to dances, out to eat, etc.


PS - This passage helps to keep things in perspective for me: (Ecclesiastes)

For everything there is a season, and a time for every matter under heaven:

a time to be born, and a time to die; a time to plant, and a time to pluck up what is planted;

a time to kill, and a time to heal; a time to break down, and a time to build up;

a time to weep, and a time to laugh; a time to mourn, and a time to dance;

a time to throw away stones, and a time to gather stones together; a time to embrace, and a time to refrain from embracing;

a time to seek, and a time to lose; a time to keep, and a time to throw away;

a time to tear, and a time to sew; a time to keep silence, and a time to speak;

a time to love, and a time to hate; a time for war, and a time for peace.

[roxy118]

thanks koko. my brain was moving faster than my fingers. im hoping the intensity of this feeling subsides. how do you deal with it?Roxy

[KoKo]

Hey roxy!

The intense feeling that you are speaking of is the guilt that you mentioned?

Remember, we have to take care of ourselves first. You don't have to feel obligated to others, if being with certain people causes you stress.

I do better with being around 1 or 2 friends, as opposed to a group of friends.

I tend to get sensory overload easily.

[pennstater]

Since I am relatively stable, my thoughts may not be relevant. But just wanted to comment in the event it helps.

Our friendships can change over time, as people go thru different life stages and responsibilities (rent vs home maintenance, single vs married, kids vs no-kids, illness vs good health, etc...)

Throughout life, we tend to make friends with people we have things in common with and who understand us. So to me, it makes sense that you are feeling more comfortable around other people with MS.

If you have the bandwidth and do have a few really good friends who don't have MS, they are a treasure. But for other friends who are not there for you when you truly need someone, they may not be worth the limited energy you may have. I have over time kept a few good friends that I see, and some others that we spend most of the time over the phone.

The only other thing I would consider is if depression is playing any role in wanting to withdraw from friendships. If that is the case, then you definitely want to seek treatment. Once the depression resolves, then your friendship picture will be clearer.

As KoKo said, you need to take care of you. If changing or losing some friendships to simplify life helps you take care of yourself, don't feel guilty.

[REG53]

Yes, I can relate. I now shy away from many gatherings mostly because of bladder and bowel issues. I get so nervous when I do go because of those problems. It also hurts to watch people my age with no disability not that I want them to have problems but it often makes me feel sorry for myself.

Jesus is the only reason I keep going. I try to go to church on Sunday but other than that I just assume day home but that's not always possible.

I wish you all the best roxy

KoKo I have always loved that passage.

[Seasha]

Stay strong and take care, Roxy!

I agree with the comments of many others here and my experiences are very similar! One thing I did right away when I was feeling lonely/left out was to find a local in-person support group. It changed my outlook for the better being around others who faced similar challenges and knew what I was going through. I no longer go to the group, but I still connect with a very good friend from that time.

If you are interested, here is a link to find a chapter for a support group near you. There are quite a few areas so keep going to the next page and hopefully you will find something near you.

https://www.nationalmssociety.org/Se...&chap=0&page=1

OR use this https://www.nationalmssociety.org/Chapters (put in your zip code)

KoKo - I love that passage too.

[roxy118]

thank you all for responding. i dont feel alone or feel guilty now that i know others go through this. Best to all
Roxy

[Pistachio]

I understand this. I'll also admit that listening to other groan and complain about aches and pains, etc frustrates the heck out of me. I mean, READ the room! I know that's wrong of me to think that way but I do. When people complain and go on and on about relativity minor health issues or how tired they are I want to shout at them in a tirade of expletives and fancy neurological medical words. LOL. Like I said, it's irrational on my part but it's true.

Find people who make you happy and make feel worthy.

[Mamabug]

I don't know many other people who have MS. But, yeah. I'm always appreciate being able to share things I have in common with other people who also have a disability.

Even if their dx and symptoms are different than mine, there is still a commonality that we share.

[palmtree]

I understand that but find that people without MS inject a lifeblood in me. I have two friends who have stuck by me through this and they don’t expect me to be normal.

My mom always told me I didn’t have any friends but I think she was wrong.

In general, there is nothing wrong with hanging out with others with MS but we aren’t all the same either. It can get easy to start comparing ourselves.

[Mamabug]

thank you all for responding. i dont feel alone or feel guilty now that i know others go through this. Best to all
Roxy

I'm glad you're beginning to feel a little bit better.

[Mamabug]

I understand that but find that people without MS inject a lifeblood in me. I have two friends who have stuck by me through this and they don't expect me to be normal.

My mom always told me I didn't have any friends but I think she was wrong.

In general, there is nothing wrong with hanging out with others with MS but we aren't all the same either. It can get easy to start comparing ourselves.

Oh, I definitely agree with you. Most of my friends are without disability. And, yes. They "inject a lifeblood in me".

Finding friends with a disability is a rarity for me, and that holds it's own special place.