My friend sent me a link to an article about our families' expectations of those who have chronic illnesses, specifically during the holidays. Can't find the link, but there were some good points which got me thinking.

First the caveat: Not everybody WANTS to be educated. And although the suggestion to "print something out" and hand it to friends and family is probably a good idea, I can't see myself doing it. I'd feel like I was shoving my complaints and excuses in their faces.

Anyway, here some gaps in education:

They know I'm easily fatigued, but they DON'T know that sometimes doing a couple loads of laundry OR cooking a meal is ALL I can do in one day.

They know I go to bed early, but they DON'T know that sometimes my day is over at 4 p.m.

They know I have trouble getting around, but they DON'T know that their little kid or little dog or scatter rug might land me on my face.

They know that I have "tummy" problems, but they DON'T know that I flat out CAN'T eat the creamed onions no matter how many times they insist that I just "try" one.

They know that I avoid "crowds", but they DON'T know that three conversations going on at the table with the kids playing in the background locks up my brain, cause a panic attack, and/or makes me feel like I've run a marathon.

They know that I have "bad legs", but they DON'T know that I might have to try four different chairs before I find one that doesn't cause my thigh muscles to spasm, and that I have to sit on the outside because I'm very likely to have to get up and move around a few times.

(to be continued)

Thanks for this B2Y. I've lived far away from my extended family since my MS reared it's head. Soon I'll be moving in with my dad for at least a few months. He really doesn't understand how this disease affects me. He will talk at me for extended periods of time and I just can't make him understand that sometimes I can't handle lengthy conversations.

I have always been the 'go to' person in my family. They don't understand that I can't be that person anymore. I am not exaggerating at all. A couple of months ago, my married brother was getting a minor surgical procedure. He texted me in FL from PA to ask me what his blood type was! He's 43 years old! I have been handed the mom role in my family since my own mom passed away.

It's gonna be rough at first when I move back there. I'm going to be an emotional wreck because I'm going through a divorce. I hope I can get them to understand that I just can't be the person I was in the past.

B2Y, have you been reading my mind? Exactly what I go through...

I'm blessed though, the kids understand and try to make things easy for me.

While in general I'm all for education I also can't see myself handing out a flyer to family. Nor do I want to be subjected to their laundry list of ailments!!

I figure if they are interested they all know how to google and can certainly ask me questions if they are curious. Other than that I'm pretty sure it isn't on their short list of concerns.

We have fairly good boundaries as a family so I don't offer up too much information regarding MS but I also don't ever feel obligated to do more than I am able to out of peer pressure even before MS.

Few get it. I look back and say "OH. Now I get it.

I agree with Jules. Everyone knows how to google.

I have lately admitted to DH that I am getting tired of people telling me how healthy I look, they know someone so bad with MS, etc. DH tells me not to get in knots about it...but sometimes it feels kind of like they're trying to invalidate what I experience. My kids don't though...they try to act like everything is normal when I walk into walls, etc...

Your DH is a smart guy. Imo others do not hold the power to invalidate us! Hopefully that isn't their motivation but even if it is please don't allow it.

my sister told me i was getting lazy today, because we have a caregiver for my mom. it got to be too much for my dad and i to handle. i'm really taken aback. sad and angry at the same time

I read these stories and realize how lucky I am. My family immediately either researched for themselves or asked for books from me to learn about MS. My Mother kind of babied me with my MS unless she needed something. But she is gone now and I know I will miss everything she said or did whether it was good or bad. My sister has numerous illnesses and she loves to tell anyone everything about them, whether they want it or not. So I know she will take the conversation. My kids love me and they protect me yet push me. I can always count on my youngest daughter to do most of the cooking and whie doing that see where I an to see if I am cool enough. She will bring me busy stuff because she knows I want to do something. But all the while she won't make me feel like I am an invalid or baby. My other daughter, well that's another story.She won't let me do much either but she doesn't do much either.