Other than immediate family, I have not told anyone of my MG diagnosis. Since my symptoms are pretty mild now and not really interfering with anything I have not told any friends or coworkers. I guess I just feel like it is not something that I want to announce right now…. Just curious how others have handled telling friends and coworkers. When did you tell people? How did you bring it up? What did you say?
Did you feel it necessary to tell people right away after your diagnosis?
I guess since this is kind of an "invisible disease" I am hesitant to say anything because I feel like some people just won't get it...

The only people that I have told at my work are those that need to know. Sometimes I have to miss work to go to the doctor, so I felt that my supervisors should know that I am not a slacker. I also work with a bunch of nurses, and I felt that they should know in case I have a crisis. Most of the other people at work don't really know. Some suspect there is something wrong, but I don't consider it to be their business.

I had to tell at work after I was off for disability 3 times in 1 year and I had begun to hear whispers among my co-workers. My gait was so unsteady, everyone noticed. I feel better about it out in the open but it has definitely hurt my career.


good luck
kathie

Once you tell someone about MG, you can never untell them. If you don't have a good reason to talk about it, no need to tell anyone today. You can always tell them tomorrow.

I tell everyone.

And if they want to know more I am very happy to tell them what I have recently learned about Myasthenia Gravis and other autoimmune diseases.

My goal in telling people is to help destygmatize the idea that 'my life is over" or that I am "less than" before my diagnosis.

I just want to promote HOPE for anyone who is living through the impact of being diagnosed with a disease.

For me, my diagnosis doesn't mean my life is limited. It means that my life is about to change! I have decided I need to make a commitment to this change; by taking action and by taking personal responsibility for living the best life possible :-)

After my diagnosis in January 2014, I literally went into shock, then denial. Both, my self-identity and self-esteem were really shaken-up.

But, I have finally realized that I am not my diagnosis; it is only a small part of who I am as a whole. :-)

If you're uncomfortable saying anything, then don't.

I had become disabled a few years before my MG was diagnosed, so telling coworkers wasn't an issue. I'm not sure how I would've handled it. People really do not "get" MG.

Heck, some doctors don't get it either!

My family and a few friends new right away. It's been a learning curve for them, but they mostly understand it. Who wants to know as much as we do about MG? I mean, we HAVE TO know because we need to stay as strong as possible.

I can't remember who compared MG to a checking account (sorry guys) but it was a great comparison. When you run out of money, well, you're writing checks your body can't cash. What movie is that from?!!

I use the "muscle gas" metaphor. You can't run a car without gas, and our body's 640 skeletal muscles can't run without muscle gas (acetylcholine). They will sputter and not "go" anymore. Normal people have a full tank of it, but MGers start out with a third of a tank or less. And we sometimes have to rest or take drugs to refill our tank on a daily basis.

It helps to write down what you might want to say, too. For example, my family knows that I can't eat outside with them in the summer if they have a BBQ. I don't begrudge them doing that, and will stay inside to eat. There's a lot of give and take with this disease!

Good luck with whatever you decide to do.

Annie