How to deal with people's responses to MD - Muscular Dystrophy Message Board

CJs Mom · 05-16-2008, 06:44 AM

Hey everyone, I'm sure there's a thread on here with this exact question, but here goes again. How do you deal with the way certain people respond when you tell them that you or your child has MD? Some people seem so honest and concerned about your situation, while others blow it off like it's no big deal.

I know that until you are faced with this type of situation, you do not know even half of what's going on with a person's body. I have even had a few people at my church make me feel like I have no faith, they tell me that I'm worrying for no reason. I have always behaved with my responses to them, but what I would really like to say is, "I hope you never have to walk in my or my sons shoes" I truly don't want them to ever go through this, but if they do, they will really know how hurtful it is for someone to say things like that. And sometimes it seems that no matter how many times I tell someone, even family members, what MD is about, they still act like it's nothing and say things like "Maybe he'll out grow it" I always say the same thing, sorry, it's not something he's going to out grow, it's just gonna get worse, but still they don't understand!!! Some people even say, Oh, he's walking so much better today. I'll admit, some days are better than others, but waddling like a duck and falling and barely being able to get up are not signs of walking better

But I am learning to just ignore these type of people.

Sorry, I guess I just needed to vent to some people who TRULY understand what I'm talking about.

Any advise would greatly be appreciated

Lori

npwnry · 05-16-2008, 10:15 AM

Lori,

A lot of people are idiots. And faced with a new situation, they don't know how to react, so they try to make you feel better by saying idiotic things like "maybe he'll grow out of it". Ignore and/or avoid these people and work on establishing a few close friends who understand the reality of your son's condition and can be supportive to you.

Madalot · 05-16-2008, 01:39 PM

Hi Lori --

I think we've all been in those shoes, dealing with a person that just doesn't "get it." I find it incredibly frustrating myself and really try to just shrug and not worry about it. I think it's human nature to say something comforting when you don't know what else to say and frequently, that "comforting" comment is ignorant and hurtful.

I run into this a lot when people see me out and NOT using my chair (there are times I can't take it because of transportation issues). I've had more than one person look right at me and in a very accusing tone say "I thought you needed a wheelchair!!!" These comments upset me, but my husband just says to ignore them because they don't get it because they're not living it. And he's right.

I think the best thing to do is educate those that seem interested and ignore the idiots that are just that -- idiots. It's about the only thing you CAN do to save your sanity.

Kathy

michigani · 05-17-2008, 01:32 PM

Hey Lori,

Ditto, ditto, ditto to all of the above. I went through this with my friends and co-workers when I told them 6 years ago. Some were really concerned and asked questions, some seemed momentarily concerned then never mentioned it again, and some said "Oh there MUST be some pills or exercise that would make you better". Everyone reacts different and that's okay, but the ones that are hard to deal with are the ones that are ignorant, and want to be.

The hardest one I dealt with was on my last day of work just before my going away luncheon. A co-worker came into my cubical and sat down. He was a recent born-again Christian. Now...I have always had faith. My mom taught Sunday school, I grew up in a faith-filled home and I've always believed. Anyway...this guy says to me "Mark, God punishes sin with death and disease. You need to pray and this will go away". Does he think that prayer hadn't occurred to me?! And does he think he's worthy of good health and I'm not?!

My point is, don't let the jerks bother you. We understand what you and your child are going through and so do the people who really matter to you.

Mark

CJs Mom · 05-18-2008, 08:37 AM

Thanks so much guys for your responses. It is so wonderful to know that there are people out there, like all of you, who understand. And Mark, your comment on the ones who seem so concerned, then they never ask how you're doing ever again, those are the people who really irk me!!! They just "eat me up with concern for a while, and then look at me and say something stupid, like, "What's wrong with Caleb? Why does he walk like that?" UGHHHHH! What I'd really like to say is..."He's walking fine, you might need to go to the eye doctor and get checked out,!!!!!!!!!!" But I am learning to ignore these people and their lack of knowledge to this disease. Another one of my favorite sayings is, "I know he's has a muscle disease, but his walk is so cute." These people, I just shake my head and say thanks, because obviously they just don't understand why he walks so CUTE. I could talk to them till I was blue in the face and they still just wouldn't get it!
And yes, I have faith. We have been through so much with Caleb and his twin, since day one. They were 10 weeks early and stayed in the hospital for 7 weeks. I call them my little miracles, because that is what they are!!! I honestly believe God has a plan for my son, and that he will use this MD to bring glory to Himself. I may not understand why, but I do believe that God has a very special plan for his life.

Thanks again for all your support!!!
Lori