How to Get the Lupus Care You Deserve
If you are like many lupus warriors, getting yourself a doctor that listens to you, takes your concerns seriously, and responds to your questions is something you may search forever to find.
Part of this, I believe, is because lupus is so hard to diagnose in the first place. My doctor believes I have had it since I was 17, but I was not taken seriously or diagnosed until I was in my 40s.
Granted, I had periods of lupus remission in those years; times where I wondered why all the horrible pain and weird medical issues (like sudden pleurisy or pancreatitis for no known reason) suddenly stopped occurring. My condition was a mystery. But, there were enough flares you would think someone would have made a diagnosis sooner.
Instead, I received odd questions, like “are you depressed?” and I was offered prescriptions to treat mental health issues rather than someone taking the time to consider if autoimmune disease was at the root of my symptoms. Essentially, many doctors made me feel like I was imagining pain, seeking attention, and simply just getting old.
Doctors Are Rushed
Sometimes it feels like you are on a timeclock and the doctor simply wants to see your face, take a few vitals, hand you a slip, and send you on your way. Mention a new concern and you throw the whole schedule out of whack. You are a troublemaker.
Doctors are busier today than ever before, particularly specialists, because the Affordable Care Act now has many more people insured and seeking an appointment. So, the result is your appointment time is limited and your doctor has one eye on you, but the other eye is on the door to see their next patient.
So, how do you garner your doctor’s attention? How do you leave your appointment feeling your issues and questions have been addressed properly and with great care? How do you keep it short, but also accomplish everything you went to the doctors to do?
Make a List of Your Questions in Advance
With our lupus memory issues, it may be hard to think of everything you want to say and articulate it well if you feel rushed. Stumbling with questions or wandering off-point can make your doctor cut you off before you get to everything you came there to discuss. Make a list and use it.
Don't Be Afraid to Speak Your Mind
I know you probably feel your doctor is judging your complaints or symptoms. Maybe you feel dismissed. Don’t allow it.
One study found doctors would only let a patient speak for 24 seconds before redirecting them. Don’t allow that to happen — bring the conversation right back to your question. If you want to know other treatment options, your doctor should be able to tell you other choices you may have and not limit your treatment by simply rewriting the same old prescription.
Don't Dress up or Look Overly Presentable
This sounds silly, but doctors actually take stock of your appearance in their appointment notes. If you can work magic and hide how you feel by applying makeup and dressing up in nice clothing, this is not the time to do so and risk masking how badly you have been feeling.
Dress comfortably. Don’t primp. Let the doctor see how you have been living.
Don’t Be Afraid
If you are afraid of your doctor and their thoughts on your condition, it may be time to find one who listens and you feel comfortable with. You should be able to disagree, ask questions and request second opinions.
Fear is the enemy for you advocating for yourself properly. You deserve to be heard and if you do not agree with your doctor, you should be able to speak your mind without fear.