Self-Advocacy and Lupus: Charting the Course of Your Healthcare Destiny

Navigating the healthcare system when you have lupus can be frustrating to say the least. Learn how to advocate for yourself to ensure you receive the quality healthcare you need.


You’ve been there before. You recently received medical care – and now you’ve received the bill. With each line item, you become more and more confused and start to question the level of care you received in proportion to the cost in the first place. You may also notice the lab you always use suddenly and inexplicably billed you – but for what? It was routine lab work as far as you remember. Wasn’t your provider or your insurance looking out for you?

Your initial inclination may to be let the professionals handle this. Medical billers are specially trained and will notice any accounting errors – you’re pretty sure it will catch up with them during the next billing cycle, and they will send you a corrected statement (eventually). As for having faith in your healthcare practitioner, and that you’re receiving the best treatment possible, why would you think otherwise? She’s told you she has experience treating individuals like you with systemic lupus erythematosus (SLE) and she graduated from one of the best medical schools in the country.

Yes, great people may be overseeing your healthcare and hard-working individuals in the billing department may notice you’ve overpaid for treatment and will credit your account in several months’ time, but wouldn’t it feel better to have a handle on exactly how your insurance works, what to expect to pay, how to receive the best of care and feel supported?

If you answered “yes,” and are truly ready to start advocating for yourself, read on!

Self-Advocating for Quality Healthcare

The following six steps can enable you to feel more in control of your own healthcare and make you feel like you hold some power in the financial, medical and emotional decisions that can impact your overall health and well-being and become the advocate you always wanted to have by your side:

Become an Informed Healthcare Consumer

Living with a chronic illness such as lupus makes it even more imperative to learn as much as you can about how your health insurance works including billing, coverage, referrals, prescriptions, preventive care coverage (which may be free-of-charge), etc. While this may seem like a daunting task, having a more intimate understanding of how your coverage can work for you can be empowering. It may be tempting to think that your doctor understands how your insurance works, but it’s rare that they do – here’s your chance to take charge.

Get Organized – Keep Your Own Medical Records

While it may feel easier to rely on someone else or some system out there in cyber space to keep track of all of your records, it will feel better if you take this process in hand so you can have easy access to what you need when you need it. Whether you like to keep track of things electronically (yes, there are apps for that), on paper, or both, make sure to keep your own records of treatment plans, medications and reactions, billing statements, medical history information, contact information, and any additional documentation you may have received during your visits. Tell an ally where to access these records on your behalf as well.

Treat Your Healthcare as a Team Effort

If you have lupus or overlap diseases you more than likely see more than one healthcare provider. As connected as we are today, I’ve noticed that my providers don’t always seem to communicate with each other or have my most current healthcare information available even if they are all on the same electronic system. Involving all of your providers in your healthcare and treatment plans will keep everyone on the same page and again, give you some control and power over your well-being as you fill in the gaps of information.

Confidently Ask for a Second Opinion

There may come a time in your healthcare journey that you have this nagging urge to seek additional advice. You may have just received a new diagnosis, a new treatment or have been prescribed medication that’s relatively new on the lupus scene. Even if you have the utmost confidence in your practitioner’s care, you may still want to be able to put your mind completely at ease. Don’t be afraid to ask for a second opinion during these times – any healthcare practitioner with integrity will understand your fears and concerns and should be supportive and welcoming of the fact that you are taking an active interest in the treatment you receive.

Enlist an Ally

You don’t have to go this alone. Having someone from your support system who has even a general understanding of lupus (and a vested interest in your well-being) attend appointments with you may be just what you need to not only decrease stress, but provide a second pair of ears and eyes as well. This person may also be able to ask different questions of your healthcare provider that you may have not thought of as well as offer a different perspective to both you and your attending practitioner. It’s also important to note that experiencing a lupus flare, brain fog, or fatigue may impede your ability to focus and stay on task so having your best friend or sister with you at your next visit may prove invaluable.

Ask Questions

Probably the single most important thing you can do to take command of your care is to ask questions! As important as this task is, however, it may not always seem like the easiest thing to do. I think it’s natural to not want to appear as second-guessing what your practitioner is telling you because we place that person in a position of power, but most good providers welcome questions and appreciate that you are taking an active role in your own health. This is about you, not about some initials after a name and a degree on a wall. If you find yourself uncomfortable with asking questions, this is a great time to bring your ally with you to your next visit – as someone who is one step removed from your care, they may find that the art of asking questions comes more easily.

In Conclusion

Admittedly, the thought of all this can all make you feel more exhausted than you already are, but being proactive with your health and investing the time into ensuring you receive the best care possible will prove worthy. Once you have your “system” in place for approaching your healthcare, you will gain the confidence and organization you need in order to be a formidable advocate for your own health and well-being.


August 19th is National Patient Advocacy Day

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5 tips to be an effective advocate for your own health. (2019). Media Planet. 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


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.

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