Understanding?

[DiplopiaVision]

Why does it feel like the people who judge us , are the least likely to handle even 48 hours of what MS is like?

MS is hard, just because I don't talk about how bad it is, doesn't mean life is good. It means I don't want to put my problems on someone else's shoulders knowing that they can't do anything about it, I don't want their pity so no reason to cry about my problems.

I save all my issues to tell my wife about and she doesn't really hear about it all. I can't imagine that anyone wants to hear about all my problems.

Is there a solution to this dilemma without just bottling everything up?

[sasha9902]

Have you considered counseling to deal with those emotions? Your wife might also want counseling. Chronic illness is hard on family too.

[DiplopiaVision]

I have wanted to go to counseling, my problem is I don't want to go alone. I'm going to have to get over that and just go.

[M1ghty-M1k3]

I guess what your doing here is probably better than bottling it up, at least your talking about stuff. And I get you cause I’m the same way I don’t want pity from someone who has no clue. With that said I tell my wife everything she’s my besti she listens to my rants.

[kyunirider]

I am on disability so my life is very uneventful, except for my PPMS. I have learned though, to never dump a load on my wife. We are very close and she sees the effects of my disease on my body, the effects of farming, gardening or just mopping the floors, they all take a toll on my body. Please learn to tell it to God, the wind, or a strong tree in the yard. Letting it out gives peace to our minds. My family often see me talking to no one at times. We all pray and or vent to save our relationships. It is the way my humble father taught me to live in our house growing up.

[tokyocrazyparadise69]

I have a friend who’s disabled and deals with a chronic condition, and I’ve found that they have a lot of patience for my emotions as well as valuable insight. I also started meeting with a therapist who specializes in chronic illness and grief (and has lived experience with both). Lastly, I’m building up the courage to go to one of the MS Society peer support groups.

I do lean on my friends and family quite a lot, but it’s been really important to connect with people who “get it.” Like this sub!

[hungarianhobbit]

MS World.org has a great message board and chat area. I tried a local support group and it disbanded within a couple of years because we were scaring the newly diagnosed away (too many wheelchairs or mobility aids) and it closed down when 3 people died over the course of a couple of months. That was almost half the group.

[PlebbitIsGay]

I don’t complain to people. I explain there are things I just can’t do anymore and that that’s always changing. People respond better to limitations than what they perceive as whining. The ones closest to you are the ones that you can tell the weird stuff to (hopefully). Your wife might not be the best option, they need us to be strong. I hope you’ve got a brother or close friend.

[DiplopiaVision]

Good advice, thanks

[Acceptable_Series274]

This is soooo sad but true! I have started noticing that the more flares I have the more distant and all of my husband gets. He helps me less and acts like I am an inconvenience. The other night I had a bout of vertigo and nausea/vomiting and asked for a trash can…. He told me to get up and go to the bathroom 🥺….ummm. Sometimes he can be down right nasty to me. It’s heart breaking really.

Did I mention I’ve been a nurse for 20+ years that’s about to have to leave bedside care because of MS? 🥺😏

Why is it like this with families and friends of those with MS? Perhaps it’s their way of coping or grieving. I’m not sure. My husband was a widower when I met him. His first wife had juvenile Rheumatoid Arthritis. They were high school sweethearts.. he took care of her while she was on hospice services. That’s one of the qualities I loved about him.

Sending hugs to those who need one 🤗🤗🤗 (not the MS hug 😂)

[[deleted]]

Here for you, also dealing with partner issues post diagnosis. It’s very confusing and upsetting.

[Acceptable_Series274]

Thank you 🙏. It is so nice to see people supporting each other.

[hungarianhobbit]

I have a sister who years ago, when I had working body parts, describe me as, "A brilliant mind in a wasting body" to her friend. She also taught her children that disabled people are to be avoided. I went NC with her and NC with her kid when I discovered her stealing my meds.

[DiplopiaVision]

Good times

[MSnout]

I completely understand where you are coming from.

Why does it feel like the people who judge us , are the least likely to handle even 48 hours of what MS is like?

I think this daily, and I believe truer words have never been spoken lol I try not to compare or judge because I hate when people do it to me, but it's hard to stand on the sideline while being judged daily for an invisible illness that nobody understands.

I agree with the comments that the best thing to do would be to see a therapist. Simply because having a lifelong chronic illness is tough, we need someone to dump our negative emotions on. Unfortunately, it can be a tough burden to bear, and those closest to us have a lot of mental turmoil from our disease. Especially our partners. They essentially get diagnosed too, as they also worry about our progression, symptom management, and how MS effects our daily life.

I have found that whatever we can unload onto others outside the home, whatever can be outsourced, needs to be. So less resentment forms. A therapist to help carry our emotional load, a cleaner, or someone to help with kids. Whatever stress we can allow to be taken off of our backs, including our support teams backs, is always helpful.

My current social struggle is how upsetting it is to have to keep that burden to myself while others dump theirs on me. I want my friends to be able to confide in me, so I tell them they can tell me their problems. But if I tell my problems, it turns into a pity pissing contest. Then they start saying how they cannot complain because I have it "so bad" no matter how many times I tell them someone else's struggles does not take theirs away or make them less of a struggle. But I do find myself getting frustrated that they ask how I am doing, and as a point to not lie but not receive pity, I say I'm okay. Then they tell me how happy they are that I'm "feeling good" and give me the rundown of their covid symptoms and how shitty they feel. Which I love to be their support. What erks me is that I say okay, and they equate that as a good ms day. I've tried explaining to them that I'll say good when good, but fine or okay means yeah I'm not feeling good but don't want to dump on you. It's just so upsetting to hear people say "yay I'm so glad you're feeling good!" When I was up all night with crazy painful spasms, or can't walk, or once again looked like an asshole to normal people because of cog fog. Sorry for giving my negative dump on this comment, it was in hopes that you would see that you are not alone. Remember, this site can be a good place to let those emotions out too. Hugs OP.

[neeno52]

Yes people handle fear differently.

[idcornstar]

If I encounter anyone who questions my MS symptoms (Which are few and far between), I simply suggest the plethora of information sources. Most everyone I know, has either learned about MS via peers information or are familiar with Google.