Sunday, May 22, 2011

IRL - Government and Health Activism

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 poorly timed.

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?

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