By Charis: Patient, Chronic Disease Advocate & Blogger at BeingCharis.com
There is not a one-size-fits-all way to become a chronic disease advocate or activist. Everyone’s journey will be shaped by personal experiences, interests, time and ability.
I’ve gathered these tips from my own journey, but by no means is this an exhaustive list and I don’t recommend attempting them all at once. Also, while directed at people who have chronic diseases, these tips can apply to partners, caregivers, friends and family who want to become allied advocates.
1) Get comfortable telling your own story. Come out as sick. Introduce your disease to friends, family, and peers in a manner that also outlines your clear desire for them to listen – you may even need to say, “This is my story and unless you have lived it, I expect you to really hear me.” No one can tell your story for you and owning your experience can be empowering. Also consider that there are hundreds, thousands, or millions more people experiencing the same things you are.
2) Advocate for your own care first. You won’t be able to advocate on behalf of others until you know how to effectively advocate for – and take care of – yourself. Initiate a collaborative relationship with your doctors and specialists. Take equal (or more!) responsibility in your care. Communicate. Understand your rights as a patient. Don’t be afraid to divorce your doctor if needed. Appeal insurance denials. Communicate with your pharmacist(s); they generally know a lot.
3) Do your research. Learn all you can about your disease, including how it originates (if known), who gets it, how many people have it, how it is diagnosed, what treatments are offered or suggested, what current research says. Become an expert and stay up to date, because new data is always being published.
4) Educate. Commit to making sure you are a credible source of information by fact-checking multiple sources before you share news or articles. There is a difference between facts and unsupported long-standing beliefs. Be prepared and willing to engage patiently with people who will respond in different ways, ranging from curiosity to disbelief to anger to joy. Seek to educate, not alienate.
5) Turn hobbies into platforms for advocacy and awareness. Think about an activity you are passionate about. Turn that activity into a platform to share your story. For example: I use modeling and writing; I’ve built my blog around these aspects of myself. Modeling is my escape from the daily drudgery of managing my disease; I often share that reality and my story with designers, artists, photographers, and producers. I use images from my portfolio as “click bait,” to draw people in to reading what on earth a beautiful model could say about being so sick.
Perhaps you like bicycles. Can you can create dialogue around their usability for people in pain? Are you a student? Can you involve research about your disease in a project or presentation? Do you like video games? Can you share within your community how gaming helps you escape for a little while? You may be surprised at how people open up to share their own stories once someone brave opens the door.
6) Set clear boundaries. Take time to recharge. Don’t be afraid to say no when you’re stretched too thin. Limit the amount of time and energy you allot for this work – it can be draining. Remember – your body is fighting hard; that’s why you’re an advocate! Refer back to #2 as often as needed.
7) Get involved. Forge relationships with nonprofit organizations that do work related to your disease. Volunteer. Some organizations even have paid advocacy positions. Sign up for action-alerts or join committees to help plan events or outreach. Ask if your story could be highlighted in some way to raise awareness. Begin conversations within your own disease community and the larger chronic disease community about raising awareness – you can do this online and in person. The opportunities are endless.
8) Show up. Attend healthcare conferences and seminars. Ask questions, share your experiences, and network with the people and organizations there. Many times the patient voice is not heard at these professional meetings that discuss healthcare, yet we are the biggest stakeholder! There are often scholarships available as needed if you email or call and ask organizers ahead of time.
9) Write. Write letters to the editor in response to stories (or a lack there-of) about chronic disease. Submit op-eds about local policies that affect you. Write your representatives about policies that would help people with your disease (many nonprofit organizations provide fact sheets and templates to guide you). Write television, radio, and other news media stations encouraging them to cover stories about chronic illness, or to cover current events that affect you.
10) Call. Call your representatives when there is a nationwide or statewide bill, policy, or order (USA) that affects you. Again, many organizations provide fact sheets and templates to guide you. Find your reps here.
11) Participate in research. Be a guinea pig for a clinical trial or share your experiences in a survey or focus group. You might even get paid. Research can help build better treatments, awareness campaigns, support programs, and even cures. Many researchers are also shifting to including patients in all aspects of research, including as part of the research team from start to finish.
12) Start something new. Start a support group. Begin a blog. Build an organization. These are especially geared for those with an entrepreneurial spirit. Refer back to #2 & #6 often if you consider exploring these big responsibilities! If you’re not able to take on a whole blog or support group, you can still submit guest posts for already-existing blogs or offer to co-facilitate an existing support group.
13) Diversify the advocate pool. Recognize openly and often that your experience does not speak for everyone who has your condition. When you have opportunities to help other voices be heard, look for those that don’t mirror your own. It will help you and your cause grow faster and more effectively. For starters, you can share this post widely.
14) Don’t give up. Just don’t.
This piece was originally featured at BeingCharis.com.
Charis is a chronic disease advocate, writer, and model who lives with Ankylosing Spondylitis (AS), Major Depressive Disorder, Anxiety and Post-Traumatic Stress Disorder. She graduated in 2009 from Meredith College, Magna Cum Laude, with a BA in Sociology and minors in Psychology and Women’s Studies. She is also a self-titled Episcopal Geek and gives really good hugs. When able, she enjoys sewing, cooking (she’s vegan), gardening, soccer, running, and her two cats Dora and Juno.
Charis was awarded the 2014 Progress in Policy Award by the Arthritis Foundation, Pacific Region for her efforts in Statewide and National legislative advocacy efforts to improve specialty drug transparency (watch her in action). She leads the Sacramento area Spondylitis Association of America Support Group and is a member of the CreakyJoints Patient Council. Charis is additionally a member of the Standing Committee of the Episcopal Diocese of Northern California and will be a Deputy to the 2018 General Convention of the Episcopal Church in Austin, Texas.