CMT and anger

[Guest guest]

I have been noticing that some people who have been posting are angry that

everyone doesn't act in a certain way, or are knowledgeable about CMT and it's

many ways of affecting a person.

I get angry at the way CMT affects me some days. I don't think I would be human

if I didn't get angry. What I don't do is get angry at everyone around me who

doesn't understand what I have and maybe aren't real graceful about asking what

I have. Most people are very understanding and helpful once they have a basic

explanation of what my disease is, including medical people.

There are some people who are morons and always will be, to healthy people and

to those who have a disease. I don't waste my limited energy on them because

they will be what they are no matter what I say.

I consider it a good day when I can " teach " a doctor, nurse, or medical

technician something about my CMT and how it affects me. The medical schools

aren't doing it, even though CMT is becoming a more common occurance than it

used to be.

To be angry at everyone and have an attitude is not helping to educate those who

don't know anything about CMT. There are a lot of understanding people who want

to learn. Those of us with CMT are in the best position to pass along some

information to those who don't have CMT.

The last time I checked, being angry at everyone doesn't accomplish anything.

[Guest guest]

Well said !!!!

[Guest guest]

I am sharing something that helps me deal with my anger. One of the things about

anger is that it is harmful to us. It causes blood pressure to rise and cortisol

to run rampant. When one gets angry at these morons, they win. Because one ends

up hurting oneself. For my health's sake, I try to rise above somehow. I take

deep breaths. It is amazing how much focusing on breathing can calm you. Don't

let the morons get you down.

[Guest guest]

,

I think it is less about getting angry and more about why bother explaining when

there is no cure for CMT and the average person is not going to be able to do

anything to cure it anyway. Also, those of us with CMT are very resourceful in

helping ourselves so how can someone who can't relate and isn't in the medical

profession help?

Dawn

[Guest guest]

What angers me is peoples refusal to talk about CMT......be insulted if some

asks about ones disability. While they then complain that people don't know

about CMT...!!! That way it will always end up as a hidden disease,this is not

helping others that are trying to educate everyone So one day we can find a cure

for our children and their children.......just plain selfish and makes no since

to me. But I but I'm willing to take a bet these very same people will take all

the funding they can get.....and then some! Don't help when people with CMT act

like a snit!!!

Geri

[Guest guest]

Hi Dawn,

With regard to your statement " the average person is not going to be able to do

anything to cure it anyway " ...

I tend to have a different point of view. I believe that donations to the

research initiatives such as STAR are a great way for the average person to help

to find a cure.

I take opportunities when they arise to share my story and encourage people to

help to find a cure through donations. I have a specific site set up with CMTA

to enable me to do this (through the Circle of Friends program). I happily take

a pound or two (or dollars or Euros or yen - you get my point!) from folks and

then donate via my site.

Average people can help with even the smallest of symbolic gestures, especially

if we tell them how. And it makes me feel like I am helping to spread

understanding of the most common neurological condition when I have these

conversations. A win-win all around.

Hope you are doing well.

Donna from London

[Guest guest]

Thanks Donna,

It is nice to get a reply once in a while. I know quite a bit about CMT as most

of us do and also from college where I got my B.S. degree and took courses such

as Anatomy, Physiology and Neurology and aced those courses too. The thing is

when you try to explain it to someone they think you are talking over their

heads and trying to act smart. I don't know, maybe I've just run into a lot of

dumb people.

I DO ENJOY TALKING TO DOCTORS THOUGH since I have a MEDICAL EDUCATION and feel I

can use medical terminology and get my point across sufficiently. I find it

enjoyable. In the end though, I have found only small amounts of help and I know

I have to constantly remind myself that every little bit counts. Thanks again

for getting back to me.

Dawn

[Guest guest]

Good post Geri,

Since I've hit 40, now 44,I am so much more open about CMT,I'mm not afraid to

show my legs anymore.The other day my45 yr old brother and 27 yr old nephew came

over, and I asked them if he knew about my CMT. They said what are you talking

about?Then I showed him my legs and hands.I hid it well.but now I don t care who

knows about it.