Wednesday, May 20, 2009

I DO have SD, I DO!

Hi All!

Excuse me for a moment, I need to vent and that is what a blog is for, right????

Okay, how crazy is it that I am feeling bad that people can't tell that I have SD? I mean, when I had absolutely no voice for about a year, I REALLY, REALLY, REALLY wanted my voice back. Now I have about 95 - 96% of my voice back and I get a bit "miffed" when people in the SD community react negatively to me being involved because they don't believe I have SD. Crazy, right?

Part of it is that I feel strongly about advocating for people with SD. Helping them learn to deal with the disorder. Helping others understand the disorder. Spreading awareness. Seeming to not have the disorder makes me look suspicious to some people. Like a fraud.

I finally find something that I can throw myself into 100% and now I am being looked at with suspicion?

Come on! I just want to help others who have to go through the same voice issues that I had to go through. I know what it is like. I KNOW! I have BEEN THERE and definitely DONE THAT! If you don't believe me, check out my early podcasts. And THOSE were made when my voice was much better than when I first went to speech therapy! MUCH better!

Just because, through some miracle of fate, I managed to get my voice back, does that mean that I should just give up on my self-appointed mission to spread the word about SD? Should I just pretend that everything is "normal?" That I never had to deal with SD? That I never learned what it is? Should I?

Constantly having to tell others that I DO in fact has SD (no, it isn't only muscle tension - IT IS ABSD!) is getting wearing. Maybe it would be better for everyone if I just bowed out gracefully (yeah, like I am graceful at anything!) and just stayed silent and happy with my voice.

If my voice ever gets bad again, then maybe I will be more accepted but - I really don't want THAT to happen, do I?

So very frustrating!




noble pig said...

Whoever is saying that is just lame. I mean you give people hope and I hate to say it but there are people out there WHO do not want to get better becuase disability could be revoked. It's sad, but I want to know what the embosels are saying.

Chris H said...

That's sad. You shouldn't have to go 'proving' you have SD for goodness sake!
Hang in there. And NO! You don't want to lose your voice again to prove it. pfffffft!

Asthmagirl said...

There are so many misconceptions out there about what a disease is or isn't. When I tell people my daughter is autistic, some go straight to Rainman even though there is a whole spectrum. When I say I have asthma people assume that a. I must have allergies and b. the rescue inhaler will see me through anything.

The only way to overcome misconceptions about any disease is to continue to talk about it. Some folks will continue to reach their own conclusions, but you will reach others and that should be your goal!

Chin up!