@A MyMSTeam Member my 15 year old actually told me she felt I was using MS as an excuse to be tired. That was when I first started meds a year ago. It really made me mad..and sad. I dont discuss my medical stuff with her, shes too young to understand..so I give her somewhat of a pass. Just another example of the silent or invisible issues that make us appear more healthy than not! I think when I had swallowing issues, it sank in. But then those went away and honestly, people forget you have MS.

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A MyMSTea...

It is crazy the way People act. I have a 24 Yr. Old Daughter that some times doesn't get it when I say that I am worn out or in pain. I think is because We look fine and People do not see the Inside of Us!!!

Shanda, I just wish the person that diagnosed me would have said no matter what happens, you're fine. Nobody can ever tell "us" the best way to react to the MS diagnosis but to tell you "act like you feel good". Well how do they know you aren't. You aren't doing anything wrong and aren't crazy. Life has just changed, that's all. There's no good way to explain MS and those of us that have been blessed with the diagnosis know there is only 1 thing that's consistent about MS and that's it's inconsistency. People without MS are just trying to help but since the biggest MS expert really has just a bit more knowledge of MS than you, other peoples help is worth like a quarter. That used to buy goods but doesn't anymore. Appreciate that others care enough to suggest things but know they really need to stay in their own lane. Shanda, you have a new life mission. Your mission, if you choose to accept it, is to listen to everyone who has the gall to suggest things to you without truly knowing what you are going through. Remember, what ever you decide, you're right, definitely not crazy and aren't doing anything wrong

"Act like you feel good" might as well be telling a legless person "Skip when you feel tired." It may be well meaning idiots but some people just say things out of ignorance or an inability to understand. Some people are just dysfunctional jerks. I would explain to them once what is going on in my life & add "I know you meant well however please refrain from giving me advice." ... If they were not someone in my close circle I wouldn't explain anything and would just ignore them or give them my deathglare ... but I'm the cranky antisocial type ... and the pain depletes my patience. ;)

* I explain my MS fatigue like this "When my MS fatigue kicks in, I'm so exhausted it took me 30 minutes to motivate myself to brush my teeth that day, that kind of tired!" or "When my MS fatigue kicks in I'm beyond tired. I have had more energy after having my gallbladder removed!" See over sharing can work ;)

In think we all go thru that to some extent, I don’t have any obvious disability and am often told how great I look, I just reply thanks, even though sometimes I would love to tell them just how much I hurt. It’s very hard for others to understand. Getting angry and frustrated just makes everything even more difficult.