I Finally Found the Right Doctor—and Here's What I've Learned
One of the strangest lessons I have learned as a patient is that finding the right doctor is a lot like finding the right partner. Besides the obvious medical expertise, you need someone who listens closely, is willing to put in real effort to get to know you, and is genuinely interested in your well-being. Someone who treats you with the utmost respect, gives you the benefit of the doubt, and makes you feel supported during hard times.
And as in dating, oftentimes you can’t see the ways in which you’ve been dismissed or belittled by a doctor until you meet someone new who provides the kind of care and consideration you’ve always deserved. When you find the right one, you just know it—and you wonder why you ever tolerated sub-par treatment in the past. Sadly, also like dating, it can be painfully difficult to find this ideal mix of qualities in a physician, leaving most of us to settle for whatever we can get rather than what we truly need.
I found "the one"—and it shouldn't have been so hard
After cycling through several rheumatologists over the course of five years, I was lucky enough to find it. A doctor who ticks all of my boxes, is extremely knowledgeable and compassionate, and I would trust with my life. The chronic illness equivalent of a unicorn.
Lest you think it was an easy process, I've had some truly horrific experiences with doctors—rudeness, talking over me, gaslighting, misdiagnosis, and I've even been yelled at once or twice. Here’s what I know now that I wish I knew back then, because it would have saved me tons of tears, stress, and feelings of helplessness, and gotten me on a path to feeling better faster.
Your doctor should totally believe you
I'm not telling you anything you don't know if you have a chronic illness, but half the battle of getting proper treatment is finding a doctor who believes how sick you feel. Even with a clear diagnosis, scans, and bloodwork showing severe inflammation, I still had several rheumatologists doubting the severity of my pain and fatigue, and looking at me with suspicion when I shared that I could barely leave bed most days. Every appointment felt like a battle of wills, with me desperately trying to convince the doctor that I was hurting as badly as I reported.
My now-rheumatologist—I’ll call him Dr. L—has never once doubted me, invalidated me, or insinuated that I was exaggerating my pain. He trusts what I say, sight unseen. And no one should tolerate any less than that.
Your doctor should never dismiss your concerns
I am someone who asks a lot of questions, reads up on treatments, and will push back against recommendations if only to learn more about their risks and benefits. And in the past, this has miffed doctors who simply wanted me to fill their prescriptions and move along.
Dr. L lets me express my fears about treatments and addresses them one by one, provides data to back up his suggestions, and looks me directly in the eyes when I speak, not at his computer. He knows that his job is to advise and guide me, not force me into decisions. He only presents options, their possible outcomes, and often will even tell me what he would recommend to his own family—but ultimately allows me to decide and tells me I'm in charge. I know this is rare and that I hit the jackpot, but the fact is that your doctor works for you. Your priorities and concerns should be theirs, too.
Your doctor should feel like a trusted teammate
I always felt pessimistic and depressed leaving appointments in the past and could never quite put my finger on why. I was pretty sure there was something wrong with me. Now it makes total sense. No doctor had taken a personal interest in my well-being. I felt like just a number, a faceless chart, a to-do list item.
Dr. L, by contrast, is personally invested in the health outcomes of his patients. He understands that I want to learn more about my disease, the different treatments available and how they work, and emerging research, so he happily educates. Oftentimes, my appointments consist of in-depth and even fun discussions about these topics. And he never fails to ask me about my medical issues that are unrelated to his specialty and have nothing to do with ankylosing spondylitis, simply because he cares. Knowing my doctor genuinely cares about me has done wonders for my mental health, but not only that: I’ve also made progress managing my AS symptoms because of how well we work together as a team. Our shared goal is getting me better.
You deserve to feel supported
If your doctor doesn’t make you feel this way, it’s likely time to move on and find someone worthy of being entrusted with your care. Just like dating, you can’t settle or stay in a situation that is toxic for you. Your health and life are too important.
Do you use the word disability to describe your AS?