Whether you have first-hand experience with lupus and lupus overlap diseases or you are driven to fight for the people who cope with lupus, you are in a unique position to be heard – your voice is powerful!

• Introduction
• Giving Voice to Fighting Lupus and Getting Involved
• In Conclusion

Introduction

Are you an advocate or an ally? If you or someone you know has systemic lupus erythematosus (SLE), you have the amazing opportunity to create positive change. You are a lupus advocate if you personally experience lupus as a chronic disease. You know what it’s like to wake up and deal with all of the symptoms that this disease entails. You’ve learned to cope with the effects of lupus, and you would like to help others do so as well. You want them to benefit of your life experience as well as insure that you and they are receiving the best care possible.

You are a lupus ally if you do not have lupus, but are motivated to speak for those who do. Perhaps, there are people in your life you care about deeply who deal every day with the fatigue, brain fog, and the health anxieties having lupus can bring. You are an ally if you have the desire and ability to rally for people living with lupus, and you want them to receive the latest and most successful treatments needed to experience low disease activity and a better quality of life.

How can you give voice to fighting lupus?

 

Giving Voice to Fighting Lupus and Getting Involved

There are several ways you can be an advocate or ally for individuals living with lupus. From educating family and friends to visiting Capitol Hill and meeting with legislators, there are options for everyone.

• Understanding how your health insurance and billing works, communicating effectively with your healthcare practitioners, and maintaining your own healthcare records are some of the ways you as an individual with lupus can make sure you are getting the treatment – both physically and emotionally – you need.
• Educating yourself and those around you – from friends and family to the broader community about lupus – is a great way to spread the word. At times you may find yourself educating members of the medical community. This is important and necessary work. In my daily life, I’ve come across a lot of people – from friends to my hairstylist – who did not know about lupus. Trust me…now they do!
• Getting involved with an active lupus community like Kaleidoscope Fighting Lupus can be a springboard to advocacy. Join a support group or participate in fundraising events. Join in social media efforts such as Instagram and Facebook pages (check out the Kaleidoscope Facebook page. These can be an easy way to stay abreast of the latest information and to join communities of like-minded individuals who choose to make a difference. Participating in an organization like Kaleidoscope Fighting Lupus can also connect you to the national and international efforts in research and policy-making.
• Broadcast yourself! Even posting information on your own social media platforms can start the conversation. When I’ve done this, I heard from several people who have been touched by lupus and chronic illness – people that I had no idea were living with lupus!
• Participating in Patient-Centered Research can also be a form of advocacy. As someone living with lupus, you can help inform medical research by being willing a participant in clinical trials or by joining advisory panels.

In Conclusion

So, there are many ways to be an advocate or ally. Whether you do so with your support system, locally with a nonprofit, virtually on social media or nationally in Washington D.C., you have the ability to tell your story and become an agent of change.  There is something for everyone and together we can all make a difference!

 

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References

5 tips to be an effective advocate for your own health. (2019). Media Planet. https://www.futureofhealthcarenews.com/5-tips- to-be-an-advocate-for-your-own-health/

Renter, E. (2015, February 2). 6 ways to be your own health advocate. U.S. News & World Report. Retrieved February 21, 2020 from https://health.usnews.com/health-news/patient-advice/articles/2015/02/02/6-ways-to-be-your-own-health-advocate

 

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.