Three Things I Wish Doctors Knew

I have a love/hate relationship with the medical profession. I’ll bet I’m not alone. I envy people who see their doctor once a year for an annual check-up, and maybe make the occasional visit for a sinus infection or a rash. I’m not that person. If you’re chronically ill, you’re probably not that person either.

Chronic illnesses and autoimmune diseases are complicated. They often affect multiple systems and organs, so they require a multidisciplinary approach to treatment. Translation: you will grow tired of seeing so many different doctors.

As a result, I’ve had a number of doctors across various specialties – rheumatology, cardiology, pulmonology, neurology, oncology, etc. In addition to the physicians that I’ve had or still have relationships with, I’ve also encountered other doctors on a more limited basis.

Here in the U.S. we have some of the best medical care in the entire world. I know how fortunate I am to have access to hospitals that consistently rank at the top for multiple specialties.

I’m grateful to have some really excellent doctors. I’ve also had doctors who were good doctors technically. But interpersonally? Not necessarily. I’m guessing they slacked off in Bedside Manner 101 and opted for the med school version of the Cliffs Notes instead.

Three Things I wish doctors knew

So what qualities should great doctors have? There are quite a few. Having spent more time in the hospital than many people may spend in a lifetime, I’ve had plenty of time to think about what I wish I could say to every doctor everywhere. There are three ways of interacting with patients that can elevate a good doctor to a great one.

Here’s what I’d like them to know:

1. Please be patient – I’m in a vulnerable position

Literally and metaphorically. There are few things that unnerve me more than sitting in a hospital bed, attached to whirring and beeping medical equipment and clad in a hospital gown that’s outworn its welcome in the hospital laundry.

You’ve probably been there too – within the confines of a sterile hospital room. Sure, you feel lousy, but you’d still rather be home. In your own clothes. In your own bed. That’s how I felt.

When the doctor or the medical team would make rounds – as is often the case in a teaching hospital – I have felt overwhelmed and powerless.

They stood over me at the foot of the bed. Even though the visits didn’t last more than a few minutes, I have inevitably felt caught off guard. My questions? Of course I had some – but I couldn’t quite remember all of them.

Understanding that as patients we feel vulnerable is one of the most important things I wish doctors knew.

I want doctors to understand that I’m in a compromised position. Maybe I’m in pain. I may not be able to function well due to my condition or the medication. And chances are that I’m stressed. This means I may need for them to explain or clarify what they’re communicating so that I have a chance to process it.

2. When you communicate with me, meet me where I am

Each of us has different needs and preferences as to how we’d like physicians to communicate with us. We also have varying degrees of knowledge about our conditions.

There’s no easy way for a physician who’s interacting with a patient for the first time to understand where the patient falls on the spectrum of knowledge about his or her condition or its treatments. And to be fair, many patients trust that the physician knows best and may not question any of the information they receive. In fact, they may not even feel comfortable speaking up to say that they don’t understand it.

Not me. I’m a compliant patient – because I want to get well. But I’m also an educated consumer of medical care (still waiting for my honorary degree). I want to know the risks, benefits and the potential efficacy of any treatment prescribed for me.

Doctor/Patient respect has to be mutual

When I was first diagnosed with myositis, I spent half a month in the hospital. I had a muscle biopsy (a fairly typical test for diagnosing myositis). Unfortunately, I ended up with a large hematoma in my lower leg. It was extremely swollen, painful and warm to the touch. I ended up back in the hospital because they thought they might need to perform surgery. Again.

The doctor on call told me he was ordering a CT scan. Over the years I’ve had many CT scans. How many? I’ve lost count. That’s how many. So I asked him what a CT might show versus what an MRI or ultrasound might show.

His response surprised and angered me. He said, “Are you a medical professional?” This wasn’t a genuine question. He was simply reinforcing that I was the patient.

I told him that I wasn’t a medical professional. I also told him that I’d had many CT scans and was concerned about more radiation unless it was absolutely necessary. He ended up ordering an MRI.

I want doctors to understand that a patient’s questions deserve to be treated with and responded to in a respectful and professional way. We may not have a medical degree. But we have a right – and an obligation to ourselves – to fully understand tests and treatments so that we can make informed decisions.

3. Treat me like a person, not a disease

Remember those pictures of vintage circus sideshow acts – where the peculiarities ranged from the bearded lady to the man who could stretch his skin over his head? It’s difficult to imagine how those people felt about being on display for their unusual traits.

It occurs to me that the audience’s curiosity blinded them to the fact that these were people.

Have you ever felt like that? When I was in the hospital undergoing tests, there were times when I felt like a specimen.

I remember a couple of occasions where a team of doctors were crowded around me looking closely at the hyperpigmented skin on my chest. They were discussing among themselves how it might be graft-versus-host disease, a condition associated with a donor bone marrow or organ transplant.

I kept trying to explain that it wasn’t possible because I’d had a transplant with my own cells nearly 14 years before, and you can’t get graft-versus-host when you’re both the graft and the host.

One of the most unusual examples of feeling like a specimen was when I was meeting with my doctor and another doctor entered the exam room, asked me to open my mouth, took a picture and left.

In both of these cases, had it been one doctor who explained what he or she was evaluating and why, I would have been okay with it. Instead, I felt uncomfortable and vulnerable.

I want doctors to recognize that there is a human being buried beneath the symptoms and the test results. And that person simply wants to be acknowledged as such.

The right approach makes all the difference

But there’s always that one doctor. The doctor who gets it all right. I’ve been fortunate to have a couple of them. My oncologist was one of them. Equal parts competence and compassion, I trusted him with my life, literally. He made even the most difficult news somehow easier to accept because I knew that he cared about me. And he listened.

I was in the hospital when I was finally diagnosed with myositis. I’d had symptoms for so long and my health had declined so dramatically over the span of a year or so. My journey to diagnosis was anything but a linear path. I was physically and emotionally depleted.

One day the team that had been treating me came by to explain the treatment protocol. I remember asking how long it might take for me to start to feel better. They said that it could be a few months.

I was so disheartened. One of the physicians who’d been checking in on me during my stay came over to the hospital bed. He sat on the edge, grasped my hand between his, leaned in and looked me in the eye. “I’m not going to lie to you. This is a bad disease. It will take a while for the treatment to work, but you will feel better.”

I suppose some people might have found that to be discouraging. But I didn’t. Because he had done exactly what I would have hoped: he acknowledged me for who I am – a person, with all of the fragility that comes with being human.