Since this "story" about a cheerleader ran on a Fox affiliate about her "getting" Dystonia from the seasonal flu shot ran, it has been a battle worth fighting for those of us who want Dystonia to be better understood and treated better by doctors and insurance companies...
AND the general public.
Now we know that it is NOT DYSTONIA, as I have been saying, as well as others,
including specialists in the field.
My main issue is not only that I, personally, as someone with Dystonia (ST) felt frustrated that someone would go on television clearly before she had not been properly diagnosed. I waited to accept any media invitations until I was on the proper medication, had educated myself about what I have and thought about it extensively so I knew what my focus would be.
Due diligence is a responsibility.
INFORMATION IS POWER.
And after working so hard -- and my commitment to work hard for Dystonia forever, it is slightly maddening to see hackneyed press report misinformation about Dystonia.
If you even know what the affiliate news director said to me about it, you would be enraged.
"Why does it matter that we said it was Dystonia if we now know that it is not?" Well, I won that argument and he came around and could see how that would hurt our cause and search for healing.
He promised to do an extensive retraction story after finally listening to my viewpoint.
Why does it matter that she and they erroneously reported that she had Dystonia before she knew for sure?
Because it promotes misinformation about Dystonia and guess what that can lead to...
misdiagnosis, lack of diagnosis and more psychogenic diagnoses.
Do we want that? NO.
That is my opinion and that is why we should not give up on rectifying it in a big way. I am working on it, so we can slow down on the Facebook writing about it, if you like.
So, the three (or 4) main issues (again, in my opinion) are not doing due diligence before jumping at local TV invitations, terrible reporting by a handful of small stations and misinformation about Dystonia. Oh, and that another non-profit will not take down the misinformation about Dystonia.
I have much empathy for parents of children with Autism and for those with Autism, but I would never EVER use them to help a cause I am fighting for. It does not feel right in ANY way to me. Insensitive does not even come close to describing that situation. It would be so easy for them to take down their postings. If they had anyone in their families with Dystonia, I am sure those posts would have been taken down in a flash.
It feels like exploitation -- because it is. Scare tactics. Whatever you want to call it.
In closing, I am not even getting the two flu shots! :) I am not wild about vaccination, but some people need to do it based on quality press that I have read about it.
Woops, now, in closing -- I feel that this has been a healthy debate and one worth having.
It does not feel negative to me. It feels worthwhile and necessary when it comes to awareness.
As one fellow Dystonia friend said (and I had thought this, too), at the very least, we have a lot of people saying the word: "DYSTONIA"
That's something! But I want more.
(pic is of my speech at TED -- once it airs, it will help us a great deal)
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Very well said! I agree it is def a fight worth fighting. THank you so much for going to battle for all of us suffering including yourself. Still very dissapointed in the Generation Rescue team, makes me sick to my stomach. The good news is people are talking about Dystonia, and we can make a difference by informing them of the FACTS. Thanks again Rogers!
ReplyDeleteP.S. can't wait for the TED speach to be posted!!! yay!
ReplyDeleteThis post brought me right back to that place of my neurologist telling me he didn't know what was wrong and wouldn't even return my phone call. Basically, stop worrying and you will be fine was his message. Unbelievably lonely and scary place I was in at that time. When your own doctor thinks it is all in your head -- PAINFUL -- LONELY -- SAD -- SCARY --those are just some of the emotions that came spinning back when I read this post. ROGERS -- THANK YOU. You are so right. Misinformation about dystonia is so hurtful.
ReplyDeleteThis is why I check in with you, Rogers. I agree with everything you've said and even though I'm newly diagnosed, I'm very angry at the fear my family had for me vs. the lack of knowledge doctors had and the disdain for me on top of it. I'm with you. Misinformation is so hurtful and when I think of how quickly this cheerleader had a "diagnosis" and then how she was "cured", it hurts even more.
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