I make it a point not to write about political views. That's just my policy. That said, I truly think there is a place for other Health Activists like me who on one hand do not want to share or converse with their political ideaology, yet on the other hand realize that it is the responsibility of us as Americans to participate in governmant. Because I believe this has much more to do with government than politics, I'm hoping this will generate thoughts and conversation with other Health Activists. Let's see what you think...
It's been about a year and a half ago that Health Activist Teri Robert revealed
in the comments section, the abysmal number of Migraine patients and
advocates that are willing to do even the smallest things to fight for
their disease - 1000 out of 25,000 contacted. The article itself was
about pain patients and the number (1000 out of 8000) that chose to take
action. The majority complain, even whine, yet do nothing for the
greater good. Teri discussed her call to action which requires that a
patient or loved one simply click a link to make their voices heard.
She says it takes about 5 minutes, but I found that it took me less than
three... and I even took the time to personalize my message to my
legislators. One need not know any information about their government
to do this. They plug in their zip code and all the hard work is done
for them. They don't even have to actually write a message as one is
provided for them!
Why then is it so hard to get patients to do this??!
As Health Activists, we are good with things that happen online. Why
then are we so ineffective in getting other patients to put 5 minutes
toward healing themselves? What can we do to fix this?
I was appalled at Teri's facts.
Are you active in helping your legislators see the impact of
your disease/disorder? How? Do you actively encourage your community
members to take action? How?
I am moderately active where contacting my legislators are
concerned. I've told them about needed legislation for pain treatment.
I've fought for the repeal of the law that will eliminate the sales of
incandescent light bulbs next year. There are others as well. I often
receive replies, but not always. Those replies tell me that - to a
degree at least - I am being heard. As a result of those activities I
have received multiple invitations to events in which my legislators are
speaking or doing Town Hall Meetings. As yet I have not been able to
attend one of those, mostly due to flares of my health that are really
Not long ago I was invited to participate in my government and for my
illness by going to Capitol Hill in person and talking face to face
with my legislators. At first I was taken aback - I do not consider
myself at all well-spoken. My brain fog often gives me trouble with
word finding, and I am prone to being un-apologetically blunt at
inopportune times. Still, it took only a few seconds of convincing
before I found myself saying an enthusiastic "YES!" Heck, I love being
spontaneous, and I am passionate about being a Health Activist. This is
yet another opportunity to do what I have been preaching about for
years - putting my money where my mouth is.
And so despite shaking knees and fluttering heart, I am getting ready
to head off to Washington DC in about a week to try to put a face on
the disability and need for proportionate funding for my disease. I
don't know what the next days will bring, but I really, truly want to be
up to this challenge. I want to blog and tweet about it
as I go, hoping that other Health Activists might be able to use my
feelings and experiences - good or bad - to give them the courage to do
the same for their disease or disorder.
Do you have other suggestions for me? What do you think YOU
would find helpful to encourage you to become more active in your
government to benefit your health condition?
“Migraine is not a 1 or 0 thing”
2 days ago