So, you’re interested in becoming a patient advocate. That’s awesome! I truly believe that creating inspirational and educational content for others is some serious silver lining.
Although you know that sharing your story will be amazing and empowering, starting your journey of patient advocacy can feel a little intimidating, too.
Am I right?
You’re about to be vulnerable on the internet 😬 You might be preparing to share your innermost thoughts, dreams, and fears.
You’re going to stand up for others who don’t know where to turn.
Maybe you’re going to network and reach out to state and federal officials with the hopes of changing the healthcare industry for the better.
Well, don’t fret!
I’d like to share five practical tips to launch your advocacy journey. I hope these get your brain juices flowing and reduce the overwhelm that you may be feeling as you take this first step along this new journey.
Feel free to jump to the one that speaks to you!
- Join online communities
- Create your own community or brand
- Write guest posts
- Legislative advocacy
- Join WEGO Health
1. Join Online Communities
I can’t express enough how important this one is! Joining online communities—particularly on social media—just have a way of stimulating encouragement and creating real relationships.
They’ll Give You Content Ideas
But also, if one day you want to create your own community or brand, joining other communities will give you an insider look on what kind of content is missing from the internet and how YOU can fill that void.
By listening to others’ questions and concerns, you can start thinking of blog posts, videos, and social media posts that YOU can create to answer their questions. (It’s kinda like people-oriented keyword research!)
They’ll (Likely) Offer to Feature Your Story
Many online communities offer opportunities to feature their members on its blog or social media. For example, I joined The Unchargeables, and they offered to feature me on their Instagram and Facebook pages! I sent in a snapshot of my chronic illness journey and a pic; this is a great way to expand your reach and get involved in the community.
My Current Favorite Communities
Here’s a list of my favorite communities I’m currently involved in that I highly encourage you to check out:
- Blogging in Bed
- Chronic Illness Bloggers
- Young Adults Living with Spondylitis
- Chronically Fit Group
- The Mighty
2. Create Your Own Community or Brand
This can mean something different to each person. A community or brand can be created from one or more of the following:
- YouTube channel
- Facebook group or page
- Presence on Instagram, Twitter, or other social media sites
- Even starting your own business or non-profit!
- Or any combination of these
Although creating a community or brand isn’t necessarily a requirement to be a patient advocate, it can be incredibly helpful. It helps others to find and follow your work more easily and it gives you more credibility and establishes you as an expert in the industry.
I’d suggest starting with ONE of these on the list. Choose the medium that you’re most comfortable publishing content on and the one that brings you the most joy.
For example, in March 2018, I started The Comical Colon blog on WordPress. Then, slowly over the months, I added a Facebook page, Instagram account, and Twitter handle. In the future, I’d love to start a YouTube channel!
I’d also suggest adding one thing at a time. You don’t want to overwhelm yourself—especially at the very beginning!
3. Write Guest Posts
I’ve noticed that many chronic illness communities and organizations request guest contributions. If writing is your jam, this is an excellent way to offer your insight, share your story, and make connections.
Oh, and if you have a website of your own, including a direct link to in your guest post is excellent for your off-page SEO.
Do some research and find some brands or organizations you’d like to contribute to. Personally, I make a list in Excel with all the organizations I want to contact. That way, when I’m ready to write a guest post, all I have to do is go down the list.
4. Legislative Advocacy
If you’re drawn to the legal side of things more than blog writing and YouTubing, you might want to consider legislative advocacy.
Legislative advocacy is when you communicate with state and federal elected officials. By emailing, writing, and even meeting with them, you can help them reform the healthcare industry.
One of my friends and patient advocates, Molly Dunham-Friel, recently did this! She requested an interview with her legislature where she discussed the needs of IBD patients and step therapy reform. Read her Q & A to learn more about her experience!
To participate in legislative advocacy for a particular cause or organization, search their website for phrases like get involved, take action, advocacy, and ambassador program.
Taking your patient experience and your words to the hill has the power to change the healthcare industry for the better!
5. Join WEGO Health
WEGO Health is a company that connects healthcare companies with patient leaders.
Once you register as a patient leader with WEGO Health, you’ll have access to:
- Interact with other patient leaders
- Sign up for paid gigs where you might help healthcare companies with their marketing campaigns, creating product reviews, offering feedback, and other types of opportunities
- Take free courses to build your advocacy skills. Some examples include:
- How to prepare your first keynote speech
- How to cultivate an engaging online community
- Weekly social media tips
I’m a patient leader with WEGO Health, and I’d highly recommend signing up to network and sharpen your skills!
You can learn more about this amazing platform and sign up here.
Jump into Your Chronic Illness Advocacy Journey!
All of these are just ideas and food for thought. You definitely don’t have to do all five of these, especially all at the same time!
Start with the one that brings you the most joy. For me, it was starting a blog and establishing my own community before I contributed guest posts or joined any advocacy networks.
I’m proud of you for stepping into this amazing chronic illness advocacy journey. I think you’ll find it one of the most rewarding, empowering, and silver lining-creating journeys out there.
Find me on social media for more inspo!