telling/not telling employers

[Guest guest]

Elaina,

Unless you now need some " job accommodation " related to your CMT

whether in the office or the parking lot, then do not tell your

employer. Work is work and we just go and do our job to the very best

of our ability.

I always kept a strong set of boundaries regarding my CMT at work -

after once telling a casual work acquaintance, when she asked, that I

had CMT. One week later my health insurance with that employer was

terminated!

Yes, I fought it, and fought hard, and it was BS but created much

stress. I left that job 6 months later for greener pastures.

And yes, awareness is good. Like the awareness you might bring to CMT

if you went to your local news station and asked them to do a story

on CMT (I did this two years ago). Awareness is one thing - done

right, for the general public. Discussing CMT " issues " at the office,

for me, anyway, has no place.

Gretchen

P.S. Why not get your local news station to do a CMT story in May

during Peripheral Neuropathy Week?

[Guest guest]

Gretchen,

You said that an employer canceled your health insurance? How long ago did this

happen? I've changed jobs twice since being diagnosed with CMT 13 years ago and

have never been turned down for coverage. In fact, I believe it's a law now that

pre-existing conditions must be covered if you change jobs and health insurance.

As far as telling employers about my CMT, I've always been very up front with

them and they seem to appreciate my honesty. I come right out and tell them that

CMT affects my hands and legs, it doesn't affect my ability to think and that

I'll work my tail off for them. I also emphasize that I shouldn't be treated any

better or any worse than anyone else in the department.

I'm guessing that it puts their mind at ease also. I can't hide my CMT (white

AFOs really stand out with dark socks and black shoes) so telling my employer

let's them know that I've come to grips with my condition and that I won't let

it interfere with my job.

Greg

[Guest guest]

Greg,

Thanks for sharing your thoughts.

Elaina/NY

[Guest guest]

Gretchen,

Thanks for your reply. I think I will hold off for now to see what happens

after my surgery in June. I loved your idea about getting a story on the news

so I'm looking into that with the local news channels.

Thanks again.

Elaina

[Guest guest]

Dear Elaina,

I have found out that I want poeple to know I have limits but I don't want to

explain the whole story. Let's face it, we look bad on paper. I have found

that giving them a slight over view of the disability and telling them a few of

the major things I can't do is fine. Ince I have been at the work place for a

period of time, I let the cat out of the bag. CMT confuses poeple and scares

people so I keep info to a minimum and address things when needed.

Dan

[Guest guest]

Elaina,

Every year a physical was mandatory for work, at their clinic. Every year my

supervisor wanted to know how I passed. She was told I didn't go to the clinic.

I went to my own doctors who stood behind me 100 percent.

Of course if I did go to the clinic wouldn't been able to pass. Those doctors

didn't understand about CMT. So I just paid my bill instead of my employer.

Every so often she'd say, I watch you walk, I don't know how you passed your

physical. I'd smile and said well I did. She ask over and over through the

years what is it you have again. With a smile I'd say CMT and she say what is

it?

I would reply its a neuromuscular disease. Look it up on the Internet. All

kinds of information there. For over 6 years she never did. She'd get me so

frustrated at times on this.

But when I had to leave my job, she sat there and cried and said " I don't want

you to go. " It was time. When I finally made that decision, my

doctors supported me 100 percent.

They never could figure out how I could keep working. But I did. Mainly

through the support and encouragement of my friends at work. Because of them, I

worked a couple more years than I really should have.

Telling your employer is a tough decision but its one you have to make. When

the time comes you will know it's right. And remember when you do advise

your employer of your condition, they cannot discriminate against you. Oh they

might make it a little rough on you, but that's harassment and its against the

law.

When I was at the MDA last year a lady was there telling the doctor

the problems she had work, he called his assistant over and said, get the

attorney on the phone, we will handle this situation and you should have no more

problems.

I sat there, feeling sorry for her. At least my supervisor might of

drove me nuts asking questions but I was never harassed. Just remember that

some employers are very understanding and only you can make that decision. Till

then, best of health.

Elaine

[Guest guest]

Very good points Dan. Thanks for your reply.

Elaina/NY

[Guest guest]

Elaine,

Thanks for sharing your experience with me. I'll have to give the subject a

lot more thought.

Elaina/NY