Tuesday, September 17, 2013

The dilemma of raising awareness, speaking truth, and keeping your privacy safe and protected, while living with disabilities ~

A video I created to raise awareness, speak truth, and find hope:

I created a video that I created about five years ago, when I was really needing to feel productive and raise awareness. (That feeling never really went away, if you couldn’t tell!) After recently posting it on my facebook page, I received this important question. See for yourself…

MEGAN writes:
I see myself in everything you said on this video. I commend you for putting yourself out there with your name, your face, and your testimony for all to see. I too would love to do the same and make videos but I fear that it will only invite more skepticism and chastising and more anger from certain people around me that I still haven't "snapped out of it". I also fear that the social security I fought so hard to get could be jeopardized. God forbid they get the wrong idea by me putting myself out there I could just see them saying, "Oh well, she making videos and spending a lot of time on youtube and facebook and she looks fine other than the "whining" she's doing, she doesn't look like she needs social security, let’s take it away. Franky, do you have any advice for people like me who want so badly to throw up videos and scream from the mountaintops but feel held back for the reasons I've mentioned?

Here is what I have to say ‘bout that:

I definitely understand your thoughts on this. Thank you for your supportive words too!! It means so much to me. I came to a point where I realized that people were too afraid to speak about it, so I just decided to use my own story to raise awareness. 99% of the reactions have been wonderful and positive.

I did receive some very surprising backlash about it in the beginning. I heard that I had no dignity, and that I offended someone because she said 'it wasn't like I had cancer or anything serious like that.' ... Doesn't that just burn your gut to hear that? The backlash is ALWAYS from very fortunate people who have never had to deal with any serious chronic illness like this themselves. It reallyyyy hurt at first. But-- then, it just made me realize that our world really does need more educators to tell stories about these 'invisible' neuro-immune diseases, which ARE very serious and very urgent. I decided to hit it harder, and reach out even more. I could have crumbled and hid in a hole, but that would have been so harmful to my health, and to this community of countless hidden survivors.

Now, I don't get any people saying such horrible things about my health. I do hear some hateful things about being gay though. Lord, where will it end? ;-) Seriously, it just fuels me now! I am a good person, trying to help myself, as well as the millions of others who survive such deep suffering every single day. A few people who have small minds and small hearts will not stop me now!

What I suggest is, if you want to make videos, you can stand/sit/lay behind the camera and use your voice to show your diary, your art, your medicine bottles, the ceiling that you look at all day etc.

Perhaps you can record yourself being interviewed only through audio, and just put a generic photo (may or may not be of yourself) on the video, like a podcast-style video. People use names like "LymieGirlSurvivor" or "Fibroguy" or things like that. There are ways to do it.

Also, one thing that I do, and it is important to do, is to explain how the illness has very extreme fluctuations, and severe repercussions for the energy that we output. Every video I do, everyTHING that I do, has an enormous price to it with my health. Most healthy people can never fully understand that. But if we explain it, then they will understand much more. Therefore, we will receive less judgment and less scrutiny. It is our truth.

I often explain how I am able to push hard to do everything I do, and then I have to be in bed and in pain for days because of it. It is worth it, if it means that we are one step closer to more people understanding what we go through. We need research to find treatment. But we need people to care first in order to do that!! It all starts with us being brave, and telling our true stories of suffering, struggling, and daily triumph!

I sincerely do hope that this helps! Please keep your chin up, and always know that we are in this one together!

Sending Love,

Dr Franky Dolan 

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