Increasing Lupus Awareness Through Local and National Advocacy
Advocating for systemic lupus erythematosus (SLE) when you are dealing with its symptoms can seem daunting. There are ways you can advocate, however, that still can garner the attention this chronic illness needs while taking care of yourself in the process.
When I used to think about people raising awareness about a cause, I immediately thought of protesting and the thought was not appealing. Although this style of advocacy is effective and a preference for some, I am personally not always comfortable participating in that way. For me, it requires a lot of spoons, while for others it can be energizing. I have since learned that advocacy does not have to be about pounding the pavement with crowds of people in order to be taken seriously. Some of the most effective advocacy can be accomplished in other strategic ways and can often be done from home, which can be a relief if you aren’t always feeling up to facing the public.
Advocating for SLE apart from talking with your support system and your healthcare team may seem like a near impossible task. You only have so many spoons a day and often your good days are spent recovering from yesterday in preparation for tomorrow. It may feel safer to leave the advocating to someone who actually has the time, energy and the right connections to be heard especially when your overall well-being can be so unpredictable or you may be experiencing a flare. No matter how you choose to advocate for lupus, however, know that you already have a leg up on many of the people whose heads you are trying to turn in your direction – you live daily with this chronic illness and can best speak to it. You may just need a little direction in figuring out how you want to advocate, what your message is, and why you have decided to be an agent for change.
Preparing Yourself for Advocacy
Take some time for self-reflection. Having a clear picture of what’s motivating you and why will help you keep focused. Sure, you live with lupus daily and may often find yourself frustrated with the healthcare system, but being very clear on what you want to see change will help you create an effective advocacy plan. Knowing who you are will also help guide where this journey takes you. Some of us are admittedly less outspoken then others and may want more autonomous ways to advocate while some of us thrive on collaboration. Never belittle yourself for being one way or the other – like they always say, it takes a village!
Take the time to write out your thoughts around advocacy or speak with another advocate or ally about what you hope to accomplish. Articulating your motivation and what skills you bring to the table – and trust me, you do have many – will inform how you move forward. Having a plan and some direction will help keep you on your path. Knowing your strengths and limitations will also define how you want advocacy to look for you. Always, always remember, however, to place your own health and well-being first. This is a great reason to bring some allies along with you for the ride. They can keep your momentum going when you can’t.
Know Your Cause
Get to know lupus more intimately than you already do, through the experiences of others. While your personal relationship with chronic illness is invaluable, it helps to know what others experience as well. Attend a lupus support group, read blogs, watch vlogs, read newsletters, follow websites and social media pages that share credible and reliable information about current lupus news (Kaleidoscope Fighting Lupus is a great place to start). You don’t have to have a degree or a bunch of initials after your name to be educated. Keeping up-to-date with information and keeping an open mind, even if you don’t agree with something you read, will give you confidence in speaking with others…with conviction.
Share Your Story
Start by sharing your story – you have a good one to tell! Share your life experience with your allies and let them know how you’d like the future to look. Talk to your healthcare practitioners or anyone involved in your care who wants to listen. You never know – your passion for your cause can be inspiring and becoming an open book could open doors to support from people in ways you didn’t imagine!
The Many Shapes of Advocacy
Advocacy is not cookie-cutter and can take on many shapes and forms. Once you are clear on your goals, you can start advocating in a number of ways, including the following:
Advocate for Others with Lupus
You already advocate for yourself so why not advocate for others who can benefit from your wisdom and experience? Join a local support group – you may meet someone recently diagnosed or someone new to the area who could use a friend and a little extra support at their next medical visit or help navigating their insurance. There can be strength in numbers!
Take Advantage of Social Media
Memes are attention-getting, but why not use some screen time to share your story on social media and raise awareness? Post about lupus on your social media accounts or even start a page solely dedicated to lupus and make it public and searchable. Are you a closet writer? Go public and start a blog tracing your journey or if you aren’t camera-shy, start a vlog! Use social media as a tool of enlightenment. Set a reasonable schedule for yourself and go easy on yourself if you aren’t feeling up to posting.
Get Out in the Community
Put your best foot forward and speak publicly about your experience with lupus and what you hope to accomplish by being an advocate. Check with your local hospital or medical center – they may have various events or meetings where your voice would be welcomed. A local school or university may also appreciate hearing from you – check local nursing or medical schools or schools that teach complementary medicine. A local community center may even have meetings and events for the public where you would be a great addition on the agenda.
Actively Participate in Organizations that Support Lupus and/or Chronic Illness
Organizations like Kaleidoscope Fighting Lupus are always looking for a few good volunteers. Considering aligning yourself with these organizations and participate in their fundraisers, 5K walks, and other opportunities to increase awareness. Many of these organizations also participate in grassroots advocacy – as nonprofits, they reach out to the general public and ask them to contact government officials for support. Getting the message out, however, doesn’t mean you have to do so boldly and loudly – you can participate by helping send emails, make phone calls or use social media to rally the cause … or even start out by “liking” social media posts!
Kaleidoscope Fighting Lupus participates in political advocacy for those living with lupus throughout the year. This advocacy includes events in Washington, D.C. to meet with lawmakers and high-ranking officials (and their highly motivated aids) to urge Congress to fully support lupus research funding. While you may or may not be able to personally help with this level of political advocacy, you can still get your voice heard by writing letters to Senators, making phone calls to lawmakers or their constituencies or participating in town hall discussions. Ask advocate organizations about how you can help. We can attest that letters and phone calls do make a difference. Political advocacy can also take the form of protesting as a very effective way to be heard. For those of you who are comfortable with participating in protest – I support you!
August 19th is National Patient Advocacy Day!
This blog has touched on advocacy basics, but I know there are many more ways to advocate than what has been mentioned. You are part of a smart and creative community who has proven to be successful – advocates were responsible for securing millions for lupus research. Whether you are motivated by the desire to secure better healthcare for yourself or you want to see sweeping changes nationally or globally, by becoming an advocate today, you can make the difference we need to find a cure!
Advocacy: The critical first step. (2019). Lupus Research Alliance. Retrieved February 21, 2020 from https://www.lupusresearch.org/advocacy-critical-first-step/
All politics is local: 5 simple tips for becoming a better advocate. (2017, May 10). Psychology BRetrieved February 21, 2020 from https://psychologybenefits.org/2017/05/10/5-simple-tips-for-becoming-a-better-advocate/
Howe, N. (2016, June 7). Grassroots advocacy 101: A brief guide for anyone newly involved in political advocacy. Muster. Retrieved February 21, 2020 from https://www.muster.com/blog/grassroots-advocacy-101-a-brief-guide-for-anyone-newly-involved-in-government-relations
Schoenbach, A. (2019). Political advocacy, patient experience, and lupus. Lupus Corner. Retrieved February 21, 2020 from https://lupuscorner.com/political-advocacy-lupus/
Author: Liz Heintz
Updated February, 2020
Liz Heintz is a technical and creative writer who received her BA in Communications, Advocacy, and Relational Communications from Marylhurst University in Lake Oswego, Oregon. She most recently worked for several years in the healthcare industry. A native of San Francisco, California, Liz now calls the beautiful Pacific Northwest home.
All images unless otherwise noted are property of and were created by Kaleidoscope Fighting Lupus. To use one of these images, please contact us at [email protected] for written permission; image credit and link-back must be given to Kaleidoscope Fighting Lupus.
All resources provided by us are for informational purposes only and should be used as a guide or for supplemental information, not to replace the advice of a medical professional. The personal views expressed here do not necessarily encompass the views of the organization, but the information has been vetted as a relevant resource. We encourage you to be your strongest advocate and always contact your healthcare practitioner with any specific questions or concerns.