We’ve Got Awareness, Now It’s Time for Advocacy

It’s time to stop focusing on fibromyalgia awareness and start focusing on fibromyalgia advocacy.

We’ve fought so long for fibromyalgia awareness. It’s been a struggle just to get people to understand that fibromyalgia is REAL and it is debilitating and life-ending in so many ways. I believe we finally have that awareness. 

Unlike 10 years ago when I was first diagnosed, it’s rare now to encounter someone who tries to argue that fibromyalgia isn’t real, that it’s all in our heads. Doctors seem overall more understanding and knowledgeable. And, even the general public is overall accepting. 

Yes, there are still detractors and doubters out there, but they are much fewer than what we faced when I was diagnosed in 2010 and first began writing and sharing my story in hopes of raising awareness.

So, what now?

Now, it’s time that we shift our focus. It’s time we start fighting for more than just fibromyalgia awareness.

I’m so thankful to see The International Support Fibromyalgia Network doing just that, and I’m thankful to be part of the process. 

When I first saw that someone was doing a Fibromyalgia Advocacy Day in Washington DC I kind of dismissed it. I’ve seen fibromyalgia groups and nonprofits attempt to do things and watched them go nowhere. First year events are always a little questionable in any field. And, I like to have a lot of info on something before I commit my time and energy to be part of it. In my defense I didn’t realize who was behind this event or I never would have had doubts.

Then Rob from SyndioHealth mentioned that he’d talked to Melissa Talwar about the event and was planning to attend and he wanted me to as well. I trust Rob so I was willing to consider it. I still didn’t realize who was putting this together. Forgive me, sometimes I’m slow.

Then Melissa herself, the Director of The International Support Fibromyalgia Network reached out to me directly asking me to attend. “Oh, wait… YOU’RE the one putting this together?”  Well, yeah I’ll attend.

I consider Melissa a friend. We met online years ago, as I have so many other fibromyalgia advocates. About three years ago, she reached out to me and asked to visit me. She wanted to talk to me about a new nonprofit she was putting together. I was still extremely cautious. I don’t have high opinions of most of many of the nonprofits I’ve seen around fibromyalgia. And, too often find that they are more focused on their own agenda than they are actually helping the community at large.

Melissa has fibromyalgia. She’s had it since she was 14, and has been living with it for over 20 years (that’s more than twice as long as me, if you’re counting). Like me, she tried pretty much everything and finally found a combination of things that works for her. And, now she wants to take her renewed energy and really help everyone in the fibromyalgia community.

When Melissa and I sat down to talk she wasn’t 100% sure what her focus would be with her new nonprofit (which was part of why she wanted to meet). She wanted to assess what others felt were the gaps in support for fibromyalgia awareness and advocacy. She really wanted to do something. And, she wanted me on board.

I wanted to help but I was hesitant for several reasons. I didn’t really know where this was going for one. For another, I’d just started the Chronic Illness Blogger Network and felt my bandwidth was already stretched. And, third, my husband at the time was against me taking on any commitments that didn’t involve me getting paid. For those reasons I refrained from joining the board and instead watched Melissa from the sidelines as she developed her plan and began growing the International Support Fibromyalgia Network.

She’s done an  amazing job and a year ahead of schedule set up the first Fibromyalgia Advocacy Day at Capitol Hill. 

We had about 30 people from across the country join us for this inaugural event. It was a wonderful time to meeting and interacting with other fibromyalgia warriors and advocates. We teamed up to meet with our representatives and senators to urge them to increase funding for fibromyalgia research. 

The current 2020 NIH budget actually decreases funding for fibromyalgia-specific research. That budget was small already at just 14 million… and they want to cut it to 12 million. If you’ve wondered why there is so little research for fibromyalgia now you can see why.  We need more funding!

We need more funding geared towards research into the pathophysiology of fibromyalgia, better diagnostic tools, biomarkers, and differentiation of fibromyalgia from other autoimmune conditions like Lupus. 

Additionally, we need more education – for both patients and providers. Medical providers need to be educated on fibromyalgia, how to diagnose it , multidisciplinary treatment approaches, stigmatization (and how to avoid it), as well as management. This education should be provided to medical students as well as be part of continuing education for existing practitioners. 

For patients, we need coherent and cohesive information. There is so much misinformation and even the info provided on the NIH and CDC websites don’t match. These sources need to provide unified and comprehensive definitions of fibromyalgia, the symptoms, diagnostic criteria, and multidisciplinary treatment approaches.

We need so much more than this. But, this is a start. And, this is what we presented on Capitol Hill on Sept. 19.

I had no idea what to expect out of these types of meetings. For most of us, it was our first time doing these sorts of meetings. I won’t lie, I was scared and anxious. But, it was so much easier and simpler than I worried it would be. 

Mostly, we met with staffers. These staffers were young, but professional. They were interested, they asked questions. And, most importantly, they seemed to really care and want to do what they could. Obviously, they are not the ones who make the decisions. They do the research and they present the topics to the Senators and Reps. 

I believe that for a first time event like this, overall the event went well. It was exhausting, but it was worth it.  We’ll definitely be back again next year and I hope you’ll join us. 

We’ll be back again next year. And, we’ll be talking with our Senators and representatives in between.

You can too!

You can make plans now to join us for the next Fibromyalgia Advocacy Day in Washington DC. And, you can reach out to your Senators and Representatives directly through email and social media, or even phone calls to urge them to fight for our funding. 

Do not be afraid to advocate in this way. You already advocate for yourself every day, for your personal needs, for the treatment you need. But, we all need more. We deserve more. We deserve better. So, let’s make it happen. 

Join us to Support Fibromyalgia!

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