Your Life. Your Right.

“You are lucky…you could have died.”  

Those were the ominous words that came out of my rheumatologists mouth after she discovered the reason I was ill was due to another doctor not administering steroids during a recent surgery.  To say I was baffled, was an understatement.  The questions came on fast and cold like a Raynaud’s flush.  “How did they not know?  You mean, I am not the topic of conversation around the “doctors only” water cooler?  All my doctors are not exchanging treatment information about me on some online doctors chat room discussing all the in’s and out’s of my various complex medical problems?  Say what??????” And all this time, I thought, all I had to do is show up and shut up and they would know all there is about me without having to say a single solitary word.


How did one doctor not know that because of my long-term prednisone use, I required a stress dose during surgery or my adrenal glands shut down? I think the real question is, how could I (after living with lupus for 26 years now) have made such a mistake in assuming they knew?  Doctors are well-educated people, but all people make mistakes from time to time and assumption is a dangerous game. And in this scenario, that tricky game almost took my life.   Bad move, lesson learned.  Self-advocacy is a must and I let myself down.

So what does this mean?

Well, let me tell you what it DOES NOT mean.  Self-advocacy does not mean you are being a pesky persnickety patient by asking questions about your own medical care.  Self-advocacy is your right to take your health in your own hands by making carefully, clarified choices that affect your life.    This is not only an important piece, but a vital one in the lupus puzzle.  If you have never had to learn this lesson the hard way, like me, you are lucky.  If you are newly diagnosed, trying to figure out how to speak up to your doctors and have an open and honest conversation about your health, this is the blog for you.


Let’s break it down:

  1. Lupus is a chronic, complex illness that requires (usually) several specialists care.  If you don’t make sure everyone is on the same page, then there is a good chance they are not and certain things may fall through the cracks.
  2. Self-advocacy is a continuous process of learned and purposeful actions set to help you live your best life with your illness.   It is not you trying to be a “lupus know it all” it is you taking the reigns of your life and your health.
  3. Let’s state the obvious, no one knows the in’s and out’s of your body as well as you do.  You know when something isn’t right, you are not crazy, and you deserve to be heard by your doctor(s).  
  4. All doctors take an oath to not cause you harm.  In order to fulfill that oath, doctors need to make good, informed decisions.  Those decisions are based on accurate information.  If you don’t tell them your thoughts and feelings, they won’t know how to assess your needs.  They are MD’s not MR’s (mind-readers).  Tell them things that you have noticed about your body, it will only help them with their process and treatment planning.
  5. Keep your inner circle (immediate family and friends) in the loop about your lupus and other health conditions.  One day, they may have to speak on your behalf and it is important for them to know the facts.  


Your life.  Your rights.  This means:

  1. Being aware of your rights as a patient. Most hospitals have printouts of patient rights and HIPPA laws.
  2. Speaking openly and honestly with your doctor(s) and healthcare providers about your feelings, ask questions.  Ask your them to clarify if things are not clear to you.  
  3. Being intentional about being able to ask for what you feel you need and/or want as a patient.
  4. Making responsible decisions that affect your life and health. This sometimes means getting a second opinion, and that’s okay too.
  5. Being able to ask for help if you need or want it, but ultimately deciding what you want and developing a plan of action to get you there.  
  6. It is your right to educate yourself about your illness.  


“The best health care plan is a self care plan” – Nina Leavins.  This could not be more true for those living with a chronic illness like lupus.  You are lupus warriors, and as such you must arm yourself with the best weaponry available.  This includes the skill of asserting yourself before your doctors, care team, insurance representatives, therapists, etc.  By communicating clearly about your health care needs and goals, you not only empower yourself, but you can sleep at night knowing that no fact or feeling is left unturned.  And with the unpredictability of lupus, it is good to know that developing your self-advocacy ability is one thing you CAN control.  




Author:  Kelli Roseta

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.