Tuesday, June 27, 2017

Why I Advocate

Note: This piece comes at the request of the Arthritis Foundation.  I was asked to write about my experience with its Ambassador Program, and my success with one of our recent tasks.  I am honored to have been asked, and hope the following does the program justice.  For more information, visit arthritis.org/advocate/ambassador-program.

Nearly 10 years ago, I began feeling a variety of symptoms that didn’t seem to make much sense: I was exhausted and sore without doing anything strenuous, frequently weak, dizzy, and nauseous, I couldn’t sleep.  I soon learned about a condition called Fibromyalgia, but it took 4 years and a dozen doctors before one believed me and diagnosed it.  Over that time, I developed new symptoms, including skin rashes and painful swollen joints.  It took another 4 years of rotating misdiagnoses before my doctors realized that this inflammatory arthritis was part of a disease called Sarcoidosis.  These illnesses have taken so much away from me: I’m no longer able to work, I have to walk with a cane for short distances and use a scooter for longer ones, and I have to cancel more plans than I can keep.  But the Arthritis Foundation has given back so much.
It’s empowering – and invigorating – to see that even when my body won’t work the way I want it to, my mouth (and my typing fingers, when my hands don’t hurt too much to send an email) can still get things done. Not just little things – important things!

The Arthritis Foundation Ambassador Program offers opportunities to let our elected officials know who we are and what we need, as constituents and as patients.  The more involved we are, the more we build that relationship … and the easier those “asks” become.
One of our recent tasks was to obtain a proclamation recognizing May as Arthritis Awareness Month in our home state.  Each state has its own procedure for how to get this done, so I had to investigate how to do it in New York.  I was excited to learn that the process begins with the State Senator, because I’ve gotten to know mine over the past few years as an Ambassador: we follow each other on social media, we’ve emailed each other about relevant issues, and I’ve met with him a few times through our annual State Legislative Day visits.  Best of all, this year’s State Legislative Day was coming up, so my follow-up was built in.

With my husband (L) and
NYS Senator George Latimer (top)
I sent Senator Latimer an email (he actually says to call him “George,” but that still feels weird to me 😉), with a brief reminder of my story and how arthritis affects me.  I gave him details about the proclamation, and explained how it would be helpful for people like me: most people still think of arthritis as simply “grandma’s bad hip” – so they don’t realize that it can affect people at any age, or that many forms of arthritis affect more than just our joints.  Raising awareness can help patients recognize the need to get treatment sooner, and can improve quality of life with better understanding from family, friends, employers, and more.  I included NY-specific arthritis statistics, and told him I’d be seeing him the following week and could answer any questions he might have.  He responded right away, getting the process started.  When I met with him the following week, he checked with his staff on the status of that request, and explained the timeline of what would happen next.  (He also agreed to support our biosimilar legislation, which just passed in the State Senate!)  The following week, I checked the status on the NYS Senate website, and was so excited to see that it had been adopted!  Official copies of the resolution have been delivered to our State and National offices, one of which is now on its way to me.

Before I had arthritis, I never thought this type of advocacy was something I could – or would want to – do.  Politics always seemed so distant, politicians so far-removed from my reality.  I found other ways to support my community and others in need (both through work and more physical volunteer activities) … but when I became the one in need, Arthritis Foundation showed me that I wasn’t as helpless as I felt.  Advocating for the 3.8 million people in NY with some form of arthritis – or the 52 million across the country – is truly empowering.

Now more than ever, it’s so important for patients to share their stories.  We hear news every day about the battle over health care in Washington, and there are far more stories that we don’t even know about.  Our elected officials make decisions every day based on the information they have in front of them.  As advocates, we can let them know about the issues that matter to us.  As Ambassadors, we get to show them who we are, so those decisions are based on us – not nameless, faceless statistics, but real people with real lives and real needs.  

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