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
