How to Start Advocating For Yourself and Others with Chronic Illness!
I guess I’d call myself an unlikely advocate. I’ve always been outspoken, but I wasn’t extremely active in any political or social issues until my Multiple Sclerosis diagnosis in 2016.
Fast forward three years and a lot has changed. In fact, I’ve even been nominated for an award to recognize my advocacy work! WHAT?! This nomination from WeGo Health for ‘Best Kept Secret’ actually left me speechless. I am overwhelmingly honored and grateful for your support.
Since my nomination, I’ve been asked a few times as to how I got started as an advocate for myself and others with invisible illnesses, so here’s how I got started (and how you can too).
Why I started Speaking Out
Confession; I don’t think everything happens for a reason. I don’t think that my Multiple Sclerosis or any other health struggles happened to me for a reason’.
I believe that I can make the best of any situation. And I believe that by sharing my story, my struggles, and strategies, and by being vulnerable I can help raise awareness for MS and invisible illnesses. Most importantly, I can help someone know that they are NOT alone.
Since I’m a social media and affiliate marketing manager by trade, I started by simply sharing about my diagnosis on my personal Facebook, Instagram, and in some community groups, I ran at the time.
When I was first diagnosed, my doctor and I decided I should start on a Disease Modifying Therapy medication that is newer and highly effective. Originally, my insurance denied coverage, because they would prefer I started on a less effective (cheaper) medication, then have a relapse (resulting in brain damage), before starting on the more effective medication.
While my doctor and I did not want me to incur more brain damage and disabling symptoms at the age of 31, it was terrifying to hear this from my insurance. Thankfully, my doctor’s office knew exactly what to do to appeal my insurer’s decision, which is fortunate for me but reveals the impossible choices inherent in a system that does not protect patients from the whims of their insurers.
I wanted to Use My Voice to Speak Up for Others Who Weren’t Able to Speak Out
MS and other chronic illnesses are rollercoasters of unpredictability. I know that I could wake up tomorrow and have no control of another limb. My speech could be slurred. Etc. Early on, I realized that I had the power to speak up for myself and people who weren’t capable of taking on an unfair system for any multitude of reasons.
First, I started by sharing my story on social media. Second, I created a team for our local Walk MS event and my family and friends rallied with me to raise over $6,000! I was asked to be the ‘walk ambassador’ and that was my first time speaking publicly (in person) about my disease. It was a bit terrifying, but afterwards, so many people came up to me and told me how they could relate to my story, which made me feel on top of the world!
I continued to share on social media, connected with many other MS Warriors on Facebook and Instagram, and eventually started this blog and the Facebook group! Plus, I am always VERY prepared for my doctors’ appointments and I try to keep up to date with disease research and news.
If you’d like to read more about my advocacy work or endorse me for ‘Best Kept Secret’, check out my profile on the We Go Health Page.
Tips for Getting Started In Advocacy
No matter what mental or physical illnesses you’re dealing with, there are great communities, organizations, and foundations that can be found online to volunteer and connect with.
- Connect with the community or cause you want to advocate for online and through social media or a blog. Sign up for their e-newsletters to stay up to date on events.
- Network and share openly about your condition to connect with like-minded people. Sharing my story in the Boston Business Women group connected me to the talented woman, Lauren, who started The Hope Collective for people with chronic pain. After years of an online friendship, we got to meet in person when she invited me to speak at her ‘Fight Back Against Chronic Pain’ Conference in 2018.
- Sign up for local fundraiser events and help raise awareness for your cause.
- If the society you’re working with has an advocacy program, as the MS Society does, be sure to sign up there! I wish I had found the MS Society advocacy program sooner. I am so grateful to have the opportunity to be more involved! Speaking directly with local politicians about policies that will improve the lives of many other patients has ‘filled my cup’ and given me a new vision for my life. You can learn more about my latest adventures at the statehouse here. Newly diagnosed? Check out this helpful guide from the MS Society.
- Truly, the best way to advocate for yourself and others is to start talking about your struggles and sharing authentically. No, it’s not easy. But by bravely sharing your story you have the opportunity to help hundreds if not thousands of people!
For more tips to get started with advocacy and opportunities to make a difference, be sure to sign up for WeGo Health’s Patient Leader program. A
Has an unforeseen circumstance changed your vision for your life too?