Being Your Own Advocate With Lupus
When it comes to your physician and the team of doctors that manage your treatment plan for lupus, it can sometimes feel like you are the only one who truly understands this chronic disease.
Short of finding yourself a doctor who also has lupus, there are some ways you can advocate for the best possible care, no matter what lupus is doing to your body right now. Being your own health advocate is a tough job, but it is vital for us lupies.
Sadly, I believe many doctors do not know all they could and should about this complicated and multi-faceted disease, and that means some of the burden of proof and explanation falls upon us, the patients.
Why It Is Hard to Advocate for Yourself
You may feel that having to argue or stand up for better care is not in your nature and should not be required; I totally sympathize. I tend to avoid conflict more than I should and I really take it personally if I feel a doctor is dismissing a symptom I feel is important.
I even once had a primary care doctor who said my hair loss, rash and fatigue were caused by stress and getting older. His response to most of my concerns, including a bout of sudden and severe chest pain was: “Lupus does not do that. It is stress or depression — are you depressed?”
Meanwhile, I was thinking, “Um, no, only angry about your lack of concern and dismissive attitude over this crushing pain every time I inhale.”
Once I felt humiliated and dismissed enough that I got angry, I took action. Sometimes it takes outrage to stir me into proper action.
So I switched doctors, twice, until I found someone who listened, showed genuine concern and took what I said and searched for answers if she did not have them off the top of her head. She was the real deal — my medical detective and I believe the needle in a haystack of doctors who only know the basics about lupus.
My new doctor confirmed I had pleurisy (swelling of the lining of my lung due to lupus) and also sent me to a rheumatologist who she trusted and recommended. He re-confirmed my lupus diagnosis, began a treatment plan of medication (Plaquenil), pain relief options and diet modifications (no processed foods) to avoid flares.
He listened and explained things and addressed my previously dismissed concerns with, “Yes, lupus hair loss is quite common in lupus patients.” Finally.
We Are Not Crying Wolf
So, this brings me to my mission: to get you to advocate for your own better care and acknowledgement from the doctors that are supposed to be watching out for you. You may have a team you trust and who are amazing, but the odds are you may not.
When a new lupus flare arrives at your door you need doctors who do not assume you are crying wolf. The lupus wolf is real and dangerous and the last thing someone battling this disease needs is to be dismissed by a doctor because of their lack of knowledge.
If this is happening to you, you need to advocate for better treatment, more tests, different medications — whatever it might take to ease your pain and perhaps even save your life. You may need to switch doctors, and keep switching until you find one that is well educated about lupus and right for you.
