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Your advice to new Patient Leaders

WEGO Health is committed to amplifying the Patient Leader voice and it all starts with the first time a patient or caregiver shares their initial blog post, tweet or picture on Instagram. As Patient Leaders ourselves, Julie (WEGO Health Patient Leader Network Director), and I know that starting out on your advocacy journey can be daunting and intimidating. We want to make sure you have all the resources and support you need to get going.

Looking for tips on how to get started? We created this guide to being a patient leader and this webinar about how to start your own blog.

But we understand that sometimes it’s not the technical stuff that holds us back, it’s just the starting point. So we asked the members of our Patient Leader Connection Facebook Group* the following question:

 

If someone was JUST starting their advocacy journey, what would be your biggest tip to help them get started?

 

BE YOURSELF
  • Be authentic. Don’t try to be something that you’re not, and don’t try to be everything to everyone. Spread your message honestly. And stay above drama.” Megan Starshak, The Great Bowel Movement
  • “Definitely be yourself! Stay true to who you are, and never pretend to be something you’re not. We may not be doctors, or nurses, or experts in drug development, but nobody knows what it’s like to live with health conditions better than we do. Remember that YOU are an expert – just as much as anybody else around the table. Represent yourself, your community and fight for what you believe in – and don’t let people put you down!” – Simon Stones,  Arthritis, Crohn’s Disease, and Fibromyalgia Patient Leader
  • “Your story is your biggest asset. It’s the point of connection everyone else will have with you. Not your disease: YOU. Write and tell your story as much as possible, find as many points of human connection as possible within your own life – your hopes, your fears, your relationships, where, what, why, how and who – the more doors you can provide that invite people in to who you are and why they should listen to you the better. Focus on storytelling, it’s the most powerful and engaging tool we have. One last thing – your story is a journey, it has highs and lows, identify what the highs and lows are and how you will guide people between them through your storytelling. A photo of you at your lowest point – the sickest you ever were – is one of the most powerful tools in your advocacy. If you have the courage to reveal yourself at your lowest point to complete strangers, and to show them that you are still here, that you are proud of who you are, you will inspire people. “- Luke Escombe, Chronic Symphonic
GET EDUCATED
  • “Research as much as you can. You will get questions you don’t have answers to, but if you know where to direct someone you are still helping.” – Randy Patrick, Must Stop MS
  • “Becoming a health advocate is a calling. That’s geared by a passion to help and educate others. While also staying updated on new and ongoing treatments, trials as you can. Research is vital. The healthcare system has become so complex and profit-driven, patients get lost in the shuffle. Often doctors don’t take or have the time to sit with patients and explain the disease various treatment options. So it’s up to the patient leaders and health advocates.  Be present on many social media platforms and be a visible presence for your cause or condition with stories, pictures, links, and use hashtags. Boosting or sponsoring a post now and then is a good idea to reach more people worldwide and it takes just a few bucks.” Deborah Briglovich Andio, Chronically Grateful Me
  • “Be authentic- use your own experience and story to help others- finding one or two platforms and being consistent on them rather than trying to be everywhere. Pick a cause/unmet need and own the crap out of it.” – Katie Brown, I am Katie Brown
  • “Start with your story… and make sure it is accurate.” – Josh Robbins, I’m Still Josh
GET SOCIAL
  • “Get out there on multiple social media platforms and be visible for your cause with cover images and pictures of yourself, clear statements and use hashtags.” – Nichole Klute, Adrenal Diseases Patient Leader
  • “Make a plan once a week for your social media and blogging. Partner with organizations that match your advocacy by asking if you can guest blog, host a social media chat can help get you visibility.” – Katie Parker, Breast Cancer Patient Leader
  • “Just do it. Start your blog, join social media, attend conferences. You will gain confidence and credibility with time. Your best day will be when a complete stranger comes up to thank you for what you are doing.” – Erin Smith, Gluten-Free Fun
  • ‘”I would say get involved, interact! Answer comments have real conversations! Share parts of yourself and your story where it is of benefit to others, be relatable!” – Kim Berly, The Spirit in Me
  • “Taking the first step in the hardest. But do it! It is totally worth it. Just be absolutely…you. That’s who people need to see. Blog just like you talk. It should be like a conversation. Followers need the human element. Take the leap of faith, because it is something that you will never regret!” – Kimberly Hartmann, A “Dummies” Guide To Learning To Live As A Patient Instead Of A Nurse
  • “1) Be willing to use all forms of communication to reach people. Some ppl like articles, some like informational photos/memes, many like pre-recorded informational videos and some ppl really like the live video chats. I recommend using all forms of conveying info so you can reach more people.
    2) BE YOURSELF! People respond better if they feel a personal connection with you. Don’t be afraid to share your own struggles and victories! These stories make you more relatable!3) Do your research. Don’t simply share any article. Make sure you vet any articles you share, the articles can be cross-referenced and validated! DO SHARE current scientific and medical research as this provides more info to your followers and validates the medical condition/s your advocating for4) Make sure to have fun! Don’t be afraid to laugh at yourself or make jokes. Sometimes people need to laugh.5) Finally, try to make your social media site a little different than everyone else. Find your original, authentic niche and go hit the ground running!” – Kristal Kent, The Fibromyalgia Pain Chronicles
  • “First and foremost- stay true to you. Second, seek out other advocates- I find working with other empowering people in your realm, and out, can be of great benefit. Share, share, share. Not just your own story and content, but others in your area of advocacy. Ask advice and questions from others you see doing what YOU hope to do for others. Most other advocates are more than happy to support and help others!” –  Shelby Katherine, PCOS Support Girl
  • “Be real….truthful…and most importantly write what you know, not what you hear. Start small with a blog and it will grow. Share to multiple social media platforms and answer any questions truthfully. If you don’t know, direct them to someone who might…..and most of all, GOOD LUCK!!” -Vernon Laine, Crohn’s Disease – Leaving The Seat Down 
  • “I wrote a post a few weeks back on building your advocacy brand. For someone just getting started I always like to recommend starting with WHY and also collaborating with fellow advocates!!” – Lilly Stairs, LillyStairs.com
  • “Document the story. Write a book. Use the book as your platform to build. Engage social media including national television. I self-published my platform for grief in 2015. I have since performed 53 TV appearances, spoken on the main stage at Harvard and West Point. I book myself on TV and people are receiving the message. I will teach anyone here how to publish. It’s the foundation for my marketing.” – Gail King Trauco, Front Porch Therapy
TAKE CARE OF YOURSELF
  • “Give yourself time to process your diagnosis before you take on the world of advocacy. Once you begin sharing your story, you’re going to meet critics or people with a zillion questions. Don’t go public until you feel capable of handling that.” – Tiffany Jones Early, Chronic Crazy Life
  • “Don’t let the naysayers deter you.” – Tiffany Westrich-Robertson, CEO of International Foundation for Autoimmune and Autoinflammatory Arthritis
  • “I wrote a whole blog post about this because I get asked so often for advice! But the most important one for me is self-care.” – Charis Hill, Being Charis
And there you have it! If you’re looking to start your journey be sure to follow our guides, take this advice to heart and join our Patient Leader Network to stay in touch with us about all the great things you’re doing and so we can share our opportunities with you.

*As a bonus perk to joining our network, you will also be invited to join our Facebook group where these great conversations are happening!


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