In the last four years, I have played patient to some medical professionals with no regard for me as someone who needed their care. Some were more interested in telling me what they knew instead of letting me express my worries. Some didn’t even treat me as a human being. To some doctors and nurses, I have been just another ID number, one more blurry face they won’t remember half an hour after my visit.
My memory bank has archived a long list of disappointing experiences with medical staff. I don’t perfectly remember their names or faces, but I do vividly remember how they made me feel. You see, in the hospital or medical clinic setting, I am at my most vulnerable. Maybe it’s because I’m walking into a building where I am no longer considered the most knowledgeable about my body. Maybe it’s because there’s rarely any way of knowing what lies in wait for me.
In my experience, there are only two types of nurses and doctors. Those who will do their utmost to help and understand me, and those who are “just doing the rounds.” It’s the latter type — those who look through me when I explain my fears, “I don’t believe you” written all over their faces — they are the people who make me feel invalidated and unworthy of being heard.
This column is not for those doctors and nurses.
This is for the doctors and nurses who have made all the difference in my journey with lupus. The ones who always validate my concerns, no matter how minor or trivial. Those who make a point of asking about the holiday I took between appointments or inquire about my partner’s health. This is for the medical professionals who make the effort to make me feel seen and heard, the ones who make sure I never feel overshadowed by my chronic illness.
Great doctors are few and far between. To be a great doctor, it’s not enough to merely be intelligent. You could memorize all the medical articles available on the internet word for word, but that alone wouldn’t qualify you as a great doctor. Good doctors are confident and knowledgeable, but to be a great doctor is so much more than having all the answers.
When it comes to treating invisible illnesses, being a great doctor is equal parts confidence, knowledge, and empathy. Each of the three traits is as important as the others, but a doctor cannot be great without any one of them. There is so much uncertainty when it comes to chronic illness. They need to be more than only certain, smart, or compassionate. They need to be all of the above.
I’m incredibly lucky.
Throughout most of my lupus journey, I have been treated by great doctors. On second thought, “great” doesn’t quite do them justice. I’ll reluctantly settle for extraordinary but only because the English language lacks the better words to express my gratitude. “Extraordinary” is not a word rich enough to depict how my nephrologist altered the course of my life. No single word can quite articulate how someone can have such a profound and life-changing effect on you.
There have been many twists in the road with lupus but at every turn I have known transparency and confidence when in the care of the extraordinary. I was told that lupus was different for everyone and finding the right treatment was a journey. I was never promised that anything would be the perfect answer; rather, I was told that if the first option didn’t work, we wouldn’t stop trying until we found the one that did. And it’s that combination of honesty and certainty that has filled me with assurance at my most vulnerable moments.
This column wasn’t written to brag about my experience with doctors. I wrote it to express my boundless gratitude to those who have moved mountains for me. I wrote this to implore my fellow warriors to keep searching for that great doctor. Don’t ever settle. Extraordinary doctors exist, and you deserve the care of someone who wants to make a difference in your life.
What has your experience with doctors been like on your journey with lupus? Let me know in the comments!
Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today, or its parent company, BioNews, and are intended to spark discussion about issues pertaining to lupus.
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