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.
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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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