Did you know there's an organization spe... - My MSAA Community

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Did you know there's an organization specifically for invisible disabilities?

erash profile image
erash
β€’19 Replies

Even a section on what to say when someone says...but you look so good

invisibledisabilities.org/

So sorry...this web site was listed as a resource in one of my medical journal articles about a physician with an invisible disability. While there's a bit of good info on the site, I'm now realizing that it is very commercialized πŸ™

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erash profile image
erash
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19 Replies
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Morllyn profile image
Morllyn

Wow, thank you I will go to the site.

jimeka profile image
jimeka

Thank you erash, it looks vert supportive, blessings Jimeka πŸ¦‹ 🌈

greaterexp profile image
greaterexp

Thanks for the post. I hear that line all the time and don't really know what to say in response. I always just thank them, since I know they are trying to be encouraging.

Karen-x profile image
Karen-x in reply to greaterexp

I used to say, "well that's what counts" (as to you look good). But then once someone said back, "no, that's not what really counts". Lmbo. So now I'm back to not knowing what to say.

Friendship2 profile image
Friendship2 in reply to Karen-x

I usually just say "thank you!". I mean, who doesn't want to hear 'you look good!' (?) :-)

SueAB profile image
SueAB

Thank you, erash! You are a wealth of information! We are fortunate to have you in our family!

WAshingtongirl profile image
WAshingtongirl

I was amazed to read that disabilities affect one-fifth of all Americans. Wow! Thanks, erash .

CalfeeChick profile image
CalfeeChickCommunityAmbassador

Love all your comments. Unfortunately, I am sure many of us have invisible disabilities. This may not be the time or place to say this but for me it's the time. I've had arthritis problems since I was in my late 30s, now at 68 The arthritis damage is visible in my hands but I keep trying. Just like with MS, others cannot see how we are struggling to keep our balance, find the right words, each morning wondering what the day will bring. Just keep on pedaling, keep on being positive!πŸ˜ŠπŸ™πŸŒˆ Lynn

erash profile image
erash in reply to CalfeeChick

Always the right place to say that or anything CalfeeChick

Either on that website. Or in the article where i initially saw the reference to the website, they discuss visible Concurrently with invisible disabilities.

I was just thinking how I'm often surprised at how apparent my "invisible" wide stance gait or finding a wall for support balance is to others. And also, how invisible word finding or other memory issues are whe I think it's glaringly visible.

Sorry, 1st cup coffee --still rambling this AM

WAshingtongirl profile image
WAshingtongirl in reply to erash

I find it difficult when people think because I am doing better physically (maybe one crutch instead of two on that particular day), that I am better! And I mean better! Seriously?

I believe it is due to a lack of true understanding of the disease and how the invisible symptoms (fatigue, cognitive, pain, sensory, etc) can be just as hard and, sometimes, even more difficult at times.

A friend commented recently on my clean house. What she doesn't realize is that all I can do is clean my house! I can't do anything else-or I don't have the energy to do anymore than that. And she has no clue as to how long it takes me (over how many days) to keep it that way. Fortunately, I don't have children still at home to care for, and my husband is easy-sandwiches for dinner are fine with him. Otherwise, my house would not be as clean. You can't do it all-period! And with MS? Even less. But even our well-meaning friends don't understand.

Now, my mother, who reads everything she can on MS, did make the comment about my brain and memory the other day. Hmm. Not sure if that's a good thing or not. πŸ˜‰

erash profile image
erash in reply to WAshingtongirl

I know what u mean WAshingtongirl

Once when I was commenting on my cognitive issues, my mother said, "yeh, I've noticed."

Usually she's in denial and says I'm too hard on myself so I was taken aback and just a bit upset that she noticed something.

Clean houses are very satisfying. I never appreciated this so much when I was working 😊

CalfeeChick profile image
CalfeeChickCommunityAmbassador in reply to WAshingtongirl

She's trying, maybe.

Friendship2 profile image
Friendship2 in reply to WAshingtongirl

I found this line to be profound: "You'll never understand until it happens to you."

RoyceNewton profile image
RoyceNewton

thank you so very much I try as hard as I can to look this good. Somedays are easier than other & some days I just look good. Today is a better day, but if u see me on a bad day please say I look good, those days I need the boost. Thanks

WAshingtongirl profile image
WAshingtongirl in reply to RoyceNewton

Great response. RoyceNewton . I'm a little slow on my toes when it comes to a quick (and great) reply. I usually just stand there and smile-sort of dumbfounded, to tell the truth. πŸ˜³πŸ’•

RoyceNewton profile image
RoyceNewton in reply to WAshingtongirl

that works as well

LISAANNE0309 profile image
LISAANNE0309

I love that response. I will try to remember it.

jennie62 profile image
jennie62

The only thing I can say is "ditto". Everyone has said what I was going to say. Today I'm having issues with memory and aches/pains so I can't write anything else. I'm just happy you posted about invisible disabilities erash . Thank you and everyone here for knowing what it is and knowing what it's like.

Thankful for the "edit" on the response button

Fancy1959 profile image
Fancy1959

erash, you get an A+ for effort. Thanks for looking for resources to benefit the chat room every chance you get. Fancy1959.

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