They don't get it

[Humbrd]

I was wondering if anyone else deals with people just not getting what they're going through. 90 percent of the time I don't talk about my ms. And I don't complain about my symptoms or how I'm feeling. Mainly because I don't want Ms to be the focus of my life or on my mind all the time. The people in my life who know, still expect me to be able to do the things I used to. Every once in awhile I remind them but they still just don't get it.

[DM0329]

Boy can I relate to your post! I also experience this from family members. I've found the only people who really "relate" are fellow MSers.

Hang In There!

[Humbrd in reply to DM0329]

Thanks. I'm Finding that you're right only those of us with MS know it's like. It's been 2 years that I have been diagnosed. But had symptoms long before that. My sister had MS that progressed very severely and passed away five years ago. She had many friends before that and I saw them Drift Away and only one came to her funeral. So I have many fears of people not understanding and sticking by. I think other people's fears of what Ms is makes them distance themselves.

[greaterexp]

If you don't have MS, you probably don't get MS. I'd bet everyone here understands that problem. Even my darling husband, who loves me, needed a few years to get used to my limitations. But to be fair, my limitations change every day, and even I'm continually amazed.

I'm trying to change my expectations of others. I try not to expect them to understand, and when, on occasion, they do seem to understand, I'm pleasantly surprised.

[Humbrd in reply to greaterexp]

Good advice. I try not to expect too much from people but when I'm having a bad day I don't want to be pressured into doing things I'm not up to.

[greaterexp in reply to Humbrd]

Yes! Those are the really tough times for me, too. I feel as though I shouldn't have to explain again why I can't do something or attend some function to folks who know I have MS. But few people have taken the time to find out about MS and understand how variable it can be. I was even a nurse and I had no idea that the symptoms could change on a dime!

[Kenu]

Totally relate my brother seems to forget about it and starts to complain about a sore muscle. I don’t complain either but at times I have to remind someone about MS. My close friends are great about it and try to get me to slow down and let them do it which is great 👍 Stay strong and stay positive and move forward 👍🙏😊🤗 Ken 🐾🐾

[jimeka in reply to Kenu]

Good advice 👍

[carolek572 CommunityAmbassador]

I understand all too well, Humbrd I also, do not explain 'ms' too much, because, unless it can be done in 10 seconds, they do not want to know... so just telling them what 'ms' means is usually all what they want to hear. On another subject, I do love the support and understanding that this forum provides, and the approach and experiences, that its members have, makes me wiser to handling such things. Keep Smiling

[Humbrd in reply to carolek572]

Thanks to all. I already feel a little better hearing what you all have said and understanding. 🌻

[mrsmike]

I think we've all been there.🙂

[Goldilockssearching]

My sister was looking for a hike to go on w my kids. She said it is only a mile and a half so I could go! I barely make it to the mailbox & back most days (600 ft give or take) 2 & 3 (still mid dx flair) yrs ago my mom suggested we go & walk around the fair.

Being able to walk is so taken for granted! I too used to think I could go on for miles & did. Now I think about EVERY step ☹️

[pamgarner in reply to Goldilockssearching]

ain't that the truth,i look at people i think they don't appreciate the fact they can walk so well ,walking normal ,i know I didn't before all of this,and oh my to see a child run

[Ladybriars]

I've been there with family and friends. This is a good place for us MS people. Glad you can express to us the things we all know too well. Hang in there. Have a good day!

[mm1527mm]

me!!! I can relate and it is beyond frustrating to me. Like my family members asking me to take walks with them during a heat wave when i explained to them numerous times i do not need to chance a relapse like last summer in the heat.

[Humbrd in reply to mm1527mm]

Yes, it's frustrating because I think that they forget.

[mm1527mm in reply to Humbrd]

Either they forget or seem to not believe or want to understand

[kdali]

I don’t mention it unless it’s necessary.

[Doubled51]

I understand all to well. My wife has never understood. Without this forum I’d go crazy with frustration at times. But we all understand and I can come here anything and somebody here can make me understand that I’m not alone. Hang in there.

Donnie

[ahrogers]

In addition to not understanding there are also those who know someone with MS to which they compare you. Inevitably it is someone who is either in much better functional status or much worse. Even a doctor I used to work with me told me a guy at his gym has MS and he could do everything he could.

I don't usually bother trying to get people to understand but I had a way to explain my fatigue to my husband yesterday. Last Friday it was pretty bad and when I was getting dressed for work I put my shirt on backwards. The effort to turn it around seemed so great I considered leaving it on backwards. He seemed to get it but I am sure the understanding will only last so long.

[Humbrd in reply to ahrogers]

I can relate to that. My cousin who is a teacher brought up that a woman she works with still teaches. And my son said he met a woman who has Ms and is doing perfectly fine. Now that I write it and think about it maybe they are Wishful that I am the same as those are or don't want to see me worse than those. But just because he met that woman on one evening doesn't mean she's perfectly fine. That's the thing, sometimes on the outside we look fine but we are struggling on the inside hiding it from others. And if we're having a "good" day, we must be perfectly fine in their eyes.

[Turtlepie]

I understand that. I started taking mavenclad and told my church family and ever since they ask me if it's working and if I am feeling better. I have had to explain that it doesn't work like an antibiotic or pain pill that it will be a long time before I know if it is helping me. But I stay patient with them and do my best to inform them the best that I can

[Bwine]

My favorite is when I choose to share my MS with people and I get a “you don’t look sick!” What do I look like? What am I supposed to look like? I parked in a handicap parking spot at the grocery store once and a very, not so nice gentleman, who didn’t think I needed to be there, (and he made sure to tell me) told me that I wasn’t “driving the kind of car that parks in those spots!” WHAT? So now we have a “kind of car?” No way did I waste any time with this stranger, but the gist of it is that NO ONE will ever understand completely unless they live it. We have to do what is best for us. We’ll always understand each other and I’m always here to listen to any of you.

[Elizt3]

How can people understand? So many of our symptoms are invisible. So many of us “look OK”. One of my best friends at work who’s known me for decades still looks at me and often says to me how great I’m looking and I must be doing well. The outside definitely doesn’t reflect how I’m feeling on the inside.

[CrazyCatWom]

I definately deal with someone who still is oblivious after 25 years. I've talked here, and at home, about my vibrating flippers (formally known as human hands). He just doesn't get it. When we're grocery shopping, I'm supposed to grab this, and that, oh! and about 4 more of those, and he's walked off with the cart and everything I thought I could put in the cart, is now rolling around in the floor because I've dropped it all. I'll just say to those who are staring at me that the octopus transplant wasn't successful.

[timothy228]

forget about it takes one to know one the only people who know what you are going thru are here the only time i say anything its i am not drunk i got a medical thing going on

[rjoneslaw]

I dont say anything at all