"What's Up, Doc?" What the Doctor-Patient Relationship Means to Me

Your relationship with your doctor can have a big impact on your health. Since your doctor is a key member of your healthcare team, they should be someone you are happy to see and comfortable interacting with.

I'm not saying you need to join a pickleball league or go to trivia nights together. However, you should feel safe in their presence and knowledge of your unique medical resume. Feeling safe improves the likelihood that you will be honest in answering that simple yet loaded question at your appointments: "How have you been doing lately?"

If you don't like or trust your doctor, you're probably more likely to shave some corners off the truth and keep answers short. In-and-Out Burger, only with a doctor instead of a hamburger. You get the drift.

My first ENT made a lasting impression

Having been born with hemophilia A, I've been really fortunate with my hematologists. But the first doctor I remember seeing on a regular basis was an ENT (ear, nose, and throat) specialist. Before receiving any clotting factor, my doctor would attempt to get the bleeding under control using other methods.

Approaching my nosebleeds with this strategy meant I'd be in the doctor's office much longer, which I didn't mind. He'd hum along to the Muzak and ask me mundane questions about what I was "up to these days." He didn't pass judgment if my reason for being there was the result of my own recklessness. Occasionally, Dr. Ron, as we called him, would say something that would fly over my head but make my mom burst into laughter.

In retrospect, I suspect that Dr. Ron dabbled in the sacred art of blue humor.

The point is that my rare disease origin story begins with a doctor whom I saw as a friend. The importance of that can't be understated, especially when you consider the amount of doctor appointments that life with a chronic, rare disease has in store for you.

This or That

I think of my doctors as partners in managing my rare disease

The best kind of doctor helps you be the best kind of patient

Today, I see a hematologist who has a great sense of humor and a respect for my history of life experiences with moderate hemophilia. She also keeps me up-to-date on new treatment options. Occasionally, we'll have a quick chat about a recent UFC fight or concert.

Not every doctor will have a personality or sense of humor that blends with yours, and that's okay. What's most important is that you have a doctor who allows you to be the best kind of patient, which is someone comfortable talking about the reality of their life with a rare disease.

What if I am not happy with my doctor?

Living with a chronic, rare disease that can shift over time means I will have doctor appointments for the rest of my life. Even when things are going great, I have a lot of doctor's appointments on the calendar.

If you aren't happy with your doctor, finding a new one isn't always easy. Especially where rare diseases are concerned. My best bit of advice in this situation is to try to be the best patient you can be – to voice concerns that might be a stumbling block in your relationship with your doctor.

We are all on the same team

Trust me, I've had patches of my life where I'd say anything to get out of a doctor's appointment sooner. And that was with doctors I liked. The lab work, the poking, the prodding, the questions...it can be a lot. Some days, you just don't want to be reminded about what a drag life with a rare disease can be.

And that's okay. Some days we are a better patient than others. The same rings true for doctors. At the end of the day, we're all on the same team.

Even if you don't feel comfortable with your doctor or are not in a position to find a new one, try to remember how important your appointments are. Don't punt an appointment because your doctor is a drip. That routine visit could be one that reveals the warning sign that turns a potentially huge problem into a manageable annoyance.

Or, that next appointment could be the icebreaker where you and your doctor bond over your love for Ted Lasso. Or tacos.

As always, thanks for reading. And I wish you nothing but the best on your own unique, rare disease journey.

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