I recently have changed my focus from Fibromyalgia awareness to Fibromyalgia advocacy. Honestly, awareness is important, but I also want to start being part of real change. Naturally, I wanted to know exactly the steps I should take to start getting involved so I went straight to an expert. Melissa Talwar from International Support Fibromyalgia Network is someone I admire and so naturally I went to her for advice. She gave us all some great ways to get started.
Related FibroMomBlog Article: Fibromyalgia and Mental Health
How Melissa got started in advocacy
After traveling around the country to meet other advocates, a group of us in the fibromyalgia community decided to fill in the gaps of change. We need much advancement and we decided as team to work together. Each of us come from different backgrounds and include various ages. We build off collaboration, mentorship and look to inspire the community.
I got into advocacy work for fibromyalgia in the early 2000s. I had been diagnosed with fibromyalgia in my teens and searched for ways to calm my pain. After being part of the first group to set-up a Proclamation in Sacramento, it ignited a passion to do more.
What advice do you have for someone wanting to make a bigger difference in the chronic illness community with advocacy?
Best advice, is to just start. Everyone is a valued member of the community. We all matter. Building a group of like minded advocate voices who care about an issue really brings about change. Don’t discount yourself and the power you have.
What are some little things the average person can do to make all our voices heard?
There are many ways to participate and have a huge impact. Blogging, vlogging and utilizing social media to share your experience and others. Starting groups in the area, sharing information with your doctors and other providers in the community. It is true that meeting with your legislators in DC, or in their home state, requires time, but you can call their office or write a letter. Really, all of these things make a huge impact. We even have new chronic illness community members interested in taking offices locally and federally.
What are some ways a patient can advocate for themselves (i.e. with doctors etc)?
Come prepared for your appointment and know you are in charge of your health. The doctor is your teammate. Therefore, you are allowed to ask questions and find the right fit. Sadly, I know sometimes providers are limited in areas, but please be persistent.
*Thank you so much to Melissa for taking the time to answer my questions. I hope this has helped answer questions and inspired more advocates.*
Getting Started With Advocacy
Ready to start advocating yet? Yes? If you are interested in writing a letter, I found a sample letter on ALTA website. Really, the important thing to remember is to show our leadership how current laws are preventing you from living a quality life. So, show this in your story and tell them what kind of change would make a difference in your life.
Lastly, if you would like to get involved with International Support Fibromyalgia Network, please click the link and send a message to Melissa. You can also comment here, and I will get you in touch with her. In addition, Support Fibro is also organizing Fibromyalgia Advocacy Day in Washington D.C. this September 18th and 19th. Honestly, the more bodies and voices we have, the more likely it is we will be heard. Truthfully, even if you don’t know if you can go but are interested please reach out. Finally, another great source for advocacy is the WEGO Health website.
***Updated article January 2020***
Get Involved
It is NOT too late to get involved. 2020 is going to be a great year for the fibromyalgia community. International Support Fibromyalgia Network (ISFN) has many programs coming up to help increase awareness, education and build community. In addition, programs are being developed to provide more resources for families. How can you get involved in this? Sign up for ISFN newsletter so you don’t miss opportunities to advocate in your own community.
Finding Support
If you or a loved one has a chronic illness whether mental or physical and you are looking for an online support group, please join The Chronically Strong Warriors on Facebook. Really, I started this group to facilitate a community where people don’t have to feel alone. So, here we share tips we have learned to cope, articles we have found and just generally support each other.
[…] still want to be an advocate for those with fibromyalgia. I desperately want to be part of the solution to a life without […]