Hello folks,

Here I am four years later and still fighting the same battle. Now it's with my stepchildren who think I should be doing "more" for them. I lost it completely on the phone with my stepdaughter because, not only do I NOT ask for anyone to help ME, but I am judged for not doing what my stepchildren think I SHOULD be doing for them and their children.

Needless to say, I re-read this post about expectations, and I printed out many of the pages to send to them. Jenna, Jan, Daniel, Lois and many others of you came to my rescue during the personal hurts I had in 2009 from my church, and now I am under attack from family. After 8 years, some of them still think I have MS.
So....as a reminder to all of your during the upcoming holidays....don't overdo, remember to be good to yourself, and if anyone has unreal expectations of you, print out this thread about expectations. It can't hurt, and maybe it will help.

Remember that the folks on the forum are here to help.
Blessed holidays to all of you.
Mary

Type of Myotonia: Paramyotonia

Country: USA

Mary, so sorry you're having to deal with that kind of stress. My husband ran interference for me many times when friends and relatives were rude or thoughtless.

Hopefully they will read some of the information and change their behavior, but if not, you can always tell them you're going to sic your forum friends on them :-)

Jan

Type of Myotonia: Thomsen's

Country: US

Thank you, Jan. That helps SO much. Thank you all forum buddies!

Type of Myotonia: Paramyotonia

Country: USA

Mary, sometimes family are the hardest ones to convince. I wish that weren't the case. Instead of approaching Myotonia as a physical problem, what if you approached it as a social problem. What I mean is the things that are causing you difficulty really have nothing to do with how MC makes you feel, but have everything to do with how you are relating to people and how people are relating to you.

I know it might sound like I am splitting hairs, but I find it easier (and also scarier) to see each issue in its proper perspective. First MC makes managing the physical world more difficult for us. Second MC also makes managing the our social world more difficult for us. Although both are true, the best way to deal with each problem, requires a completely different set of techniques. Managing the physical exhaustion of MC requires knowing our physical limits, getting proper rest and eating right. Managing people's expectations of us requires setting boundaries with others, understanding that it is very difficult for other people to understand what we go through (just think of them as children when it comes to this), and learning how to master the social game. Mixing the two complicates what is needed to succeed at either one.

There is a lot of information out there on the web about how to set boundaries, eat right, etc., but the one thing that is rarely discussed is how to master the social game when it comes to disabilities. This is not because no one wants to share their ideas, but it is because mastering the social game is so complex. What works in one situation might not work in another situation. But I will say this. The social problems that we experience from MC are not going away. Not even if we educated the entire world about our condition, most people still wouldn't understand and some people just won't care. People are too focused on their own problems, and it is hard to comprehend what we experience unless you actually experience it. So my solution is that we get creative and use what is inherent about MC to our advantage.

First off, when it comes to the way our condition works we have a distinct advantage. We are all knowing, masters of this subject, while everyone else are novices. If you had an argument about the brain with a brain surgeon, who do you think would win that argument--certainly the brain surgeon. So if someone says that you are not doing enough, or being lazy, refocus the conversation on what the real problem is--they don't know anything about Myotonia Congenita.
Ask them, "What do you know about my condition?" and no matter what the say, the response can be "So you really don't know what you are talking about. I tell you what, go do some research on-line and when you have a clue about what you are talking about then we can continue this conversation?" Now being that harsh is probably not required, but what right does anyone have in telling someone else how their body works. How arrogant is that?

This brings up another point, when someone sticks their nose into someone else's business they are at a disadvantage socially if the other person calls them on it. Every one is raised that it is rude to act this way, and being called and insensitive jerk in front of others is very embarrassing for most people--there is always the exception to the rule. This is why people get so nervous when they ask someone with a disability about their disability. As children we are taught that we are not "supposed" to do that. Or "tread lightly" is what we learn. Don't be an insensitive jerk. So here is another way that we have the advantage when people start talking about our disability, even if they are attacking us. They probably don't know it, but we are in the position of power once again. They are coming to us, in a vulnerable state, and we have an opportunity to win them over to our side for once and for all. All we have to do is relieve their anxiety that comes from their misunderstanding of our disability. And we must be gracious. And the best way to be gracious in a situation like this is bring humor into it. Humor doesn't require lengthy explanations, or arguments or discussions that make people's eyes glaze over, because they have no idea about what we are talking about. Humor just makes them laugh, which relieves anxiety, and the simple truth about most people is once your relieve their anxiety, you solve their problem for them and make them go away. And that is what we want, for them to go away, leave us alone and not criticize us for a condition that we did nothing to create--we only inherited through birth.

Type of Myotonia: Thomsens

Country: USA