"Little white lies"

[punterstein]

Anyone ever feel like they have to tell a little white lie as to why they can't, at the last minute, do something? I feel like I have to because friends don't really understand what MS does to someone, especially in the heat. I feel like I'm disappointing people when I cancel at the last minute which is a bummer because I really don't need one more thing to feel guilty about.

[Morllyn]

I know punterstein , if you tell them the truth you can see the look of "yea right, your just lazy" or " if you just got up and out more you wouldn't have fatigue ".

[kdali]

Nope, because then I have to own my own guilt about lying or own my paranoia rabbit hole to crazy town about them being mad at me...and that's an energy suck I can't afford these days. Granted, I don't have jerks for friends and try to give 24hrs notice if I need to cancel.

[punterstein in reply to kdali]

Part of the problem is I'm new to this town and I don't really know how to go about letting everyone know that I have MS. It's just kind of hard to work that into a conversation when I'm introduced to someone. You know like "Hi. Nice to meet you and by the way, I have MS." My friends from where I moved from would certainly understand but new to VA and don't have close friends like I had when I lived in NY. Any suggestions on how to let people know that when I'm walking funny it's not that I've had too much to drink? I know people wonder, but being they don't ask I really don't know how to bring it up.

[kdali in reply to punterstein]

Ohhh, I see! "Don't mind my bum leg, sometimes it acts up on me"?

I guess it depends on if you want a discussion with that person or not. If someone likes and respects you, they may be relieved to know why you "walk funny".

You mentioned avoiding heat, do you wear any cooling items? I find this gets weird looks automatically and eventually they will ask.

Delivery can help. A very confident but casual, "I have MS and it jacks up my leg sometimes, no bigs", is very different from someone who is embarrassed or ashamed saying the same thing.

One good thing about it, you can throw out the MS bomb early and weed out any people who are not going to be worth your time and effort.

I think of you cancel a lot, you will stop being invited to things.

[punterstein in reply to kdali]

Thanks, kdali. That's a very good point and a great idea to throw that MS bomb out there early. Say it casually and not make a big deal about it. Sounds like you've been down the same road.

I do have a cooling vest but haven't worn it yet. Time to take the packs out of the freezer and don that vest!! Thanks again.

[Doubled51 in reply to punterstein]

I'm still new to this but when I'm around someone and I start staggering around I'm just straight to the point. Excuse me but I don't drink or do drugs. I have ms. After that they can either repond or not. That way I told the truth one way or the other

[greaterexp]

I still want make sweatshirts that say,"You're right;I'm too young for this cane/walker. Ask me about MS." Or "You're right; I don't look disabled. Ask me about MS." How about "You're right; I walk like a drunk person. Ask me about..."

I feel fortunate that I haven't been shunned in any appreciable way by letting someone know about my MS. My family and friends have been very understanding when I have had to cancel, and I'm fortunate that it's been very rare that I've really needed to cancel plans at all. There will always be people who have difficulty understanding or who feel uncomfortable, but there is much we can do to put people at ease. We probably wouldn't have had close relationships with anyone who fits that category anyway.

I'll pray you find a comfortable way to let others know about your MS, and that you find wonderful supportive friends in your new home.

[jennie62 in reply to greaterexp]

punterstein greaterexp etc.

I love the shirts and want them too! If I ever find them I'm definitely going to share here! Please do the same!!!

I found whenever I wear my "MS is getting on my NERVES" shirt either has people come to talk with me or keeps them at a distance... until they're ready.

Last week I was at my PT and struck up a conversation with a woman there and she asked if I was there because of my knee. I came right out and told her it's because of MS no sad face/gasp response from her made me smile inside.

When I was first dx with MS I would shy away from telling others because I thought it would chase them away and I didn't feel okay with having MS myself. Now I know it's better to just come right out and tell them about my MS and accept the fact I have it . I'm normal (well, okay weird, but normal-LOL. Oops, lost my train of thought). I love some of the questions I've been asked.

Jennie

(until my cog fog goes away-hahaha)

[greaterexp in reply to jennie62]

jennie62 , I am seriously thinking about having some made, though I don't wear t-shirts. I've seen kids look at someone with an obvious disability and ask their parents what it's about. The t-shirt or sweatshirt would offer an explanation for the parent to give and perhaps open a small discussion. Until I had my diagnosis, I was pretty ignorant about much about MS, and I used to be a nurse! I can only imagine how little the average person would know. I never wanted to advertise the fact that I had some condition; it would almost seem like begging for sympathy from strangers. But it would be great during MS awareness month!

[jennie62 in reply to greaterexp]

greaterexp

Such a great idea wearing the MS shirts during MS awareness month!

I felt the same way about begging for attention, and still feel kinda weird wearing my MS shirt. The way I figure it is as long as I can help people know there's more out there they don't understand makes having MS a little worthwhile.

[kdali]

You're welcome! I usually only wear my vest for working out, and I have a neck one for everything else, mostly because I'm pretty lazy. I have read that another rockstar on this forum brings extra frozen packs with her in a little cooler. Score!

I'd love to hear how it goes for you, lots of love to you! It sucky enough to leave your support behind. I hope you find a few good people to hang out with soon.

[Allen5280 in reply to kdali]

kdali I also carry a little collapsible cooler with me everywhere I go in summertime with extra cooling packs and keep fresh ones available even if I'm not using it at the time. My cooling emergency kit goes with me everywhere this time of year. I make jokes to people when they look at me funny like... no its not my flak jacket it has ice packs to keep me cool. Here when the heat index is in the triple digits I get asked where I got it cause they want one.. non MS'ers even want one! It took a little while for me to get to the point of where I just shrug and say I have MS. Especially when I do something stupid that may or may not be due to it... lol its my get outta jail free card and I use it! I have to find some sort of advantages with this horrid affliction. 😂

[kdali in reply to Allen5280]

@allen5280 I have a collapsible Hello Kitty one, I just never thought to use it! Ikr, that's why I'm scouting for dinners 😂

[agate]

Hi @punterstein,

There are sweatshirts and Tshirts you can buy that say things like "I'm not drunk--I have MS" or even "I don't have MS--I'm drunk." One of those might be handy as a way of signalling that you have a problem-- in a light-hearted way.

I don't bother with the little white lies. If I have to cancel something, and I often do, I just say I'm sorry but I'm not feeling well and can't make it. That's for a cancellation at almost the last minute. I try to cancel as far in advance as I can. I check the weather forecast for the next day if I have somewhere to go that day, and if it looks as if it's going to be too hot for me, I can cancel a day ahead based on the forecast.

Sometimes I don't trust the forecast, and that's when my guesswork has to kick in.

If it's not a last-minute cancellation, I just say I'm sorry I can't make it.

A person would have to be downright rude to reply, "Oh? Why can't you make it?" And I figure I don't owe anyone an explanation.

I try to sound really sorry, and if it's someone I know well enough, I add a few words of explanation, like "I haven't been feeling very well lately."

That's true. For me, having MS means I'm usually not feeling especially well--not nearly well enough to do the things most people take for granted they can do.

[erash]

punterstein i always feel guilty when I use MS as my excuse but sometimes I just don't feel like it and pushing myself may have 🙁 Results

[punterstein]

Thanks everyone for your suggestions. I'm not ashamed I have MS, it just bothers me when people say "But you look so good. You must have it under control." Yeah, well, it's a day to day kind of disease". But I do appreciate everyone who can understand in this forum and giving me suggestions to use in the future.

[SlmHarris]

To my family no they all understand.

In other situations I have found my self telling a white lie.

[KimChat]

@Punterstein yes I do it all the time. But still feel guilty.