When you have a chronic illness your relationship with your doctor is second only to your spouse or your parents. Being honest (and you must be honest!) with that person means being able to trust them to hear you.

In my CI career I fired three highly recommended specialists because they were rude poopy heads. Thankfully I’ve also had wonderful physicians who literally saved my life and my mind. Not uncommonly for people with chronic illness, the path to find a good-enough doctor is an odyssey.

Laura Hillenbrand, author of the fabulous book Seabiscuit: An American Legend, was diagnosed with Chronic Fatigue Syndrome but not before she was put through all kinds of humiliation by physicians who out of ignorance did not listen to her.

“The doctor I found waved me into a chair and began asking questions and making notes, pausing to rake his fingers through a hedge of dark hair that drifted onto his brow. He ran some tests and found nothing amiss. He told me to take antacids. A few weeks later, when I returned and told him that I was getting worse, he sat me down. My problem, he said gravely, was not in my body but in my mind; the test results proved it. He told me to see a psychiatrist.”

Ms. Hillenbrand was 20 years old. At 5′ 5″ her weight had dropped to 100 pounds. She suffered from chills, fevers, exhaustion, swollen lymph nodes and dizziness. Being young and alone, she followed doctor’s orders and went to the recommended psychiatrist. After a thorough assessment:

“He wrote my internist a letter stating that he would stake his reputation on his conclusion that I was mentally healthy but suffering from a serious physical illness.”

Her doctor’s reaction?

“‘Find another psychiatrist,’ my internist said over the phone, a smile in his voice.”

Ms. Hillenbrand went through two more doctors before she found her good-enough one at Johns Hopkins. He listened to her, read all her documentation and correctly diagnosed her condition.

Recently a client of mine asked how to tell if she had a good doctor. If I were you, I said, I would look for these three basic qualities:

• Expertise, knowledge, intellectual curiosity and all the right credentials.
• Warm, receptive, a good listener and communicator. The bedside manner thing.
• A well-run office, with smart, efficient support & medical staff.

You know you’ve hit the jackpot when your doctor rates high on all three. I’ve had two doctors like that in my life, both gifts from heaven. Several were really awful. Picture this….

Scene 1: Doctor’s examining room, midtown Manhattan. Thirty-something, I sit on the examining table, my legs dangle over the side. I wear a paper shmata. My husband is standing next to me. The tall physician in his crisp lab coat faces us.

Doctor: I believe you have lupus.

Me: [I don't say anything. I'm too busy crying.]

Doctor: [With a wise-guy sneer] Why are you crying? It could be worse.

My husband and I get up and leave, never to return.

Scene 2: (A couple of years later in Buffalo, NY) Doctor’s examining room. I sit on the examining table, my legs dangle over the side, wearing that same stupid paper thing they have the nerve to call a gown.

Doctor: Clearly the disease has progressed. There’s not much we can do except hope the medication turns it around.

Me: [I don't say anything. I'm crying.]

Doctor: [Nervously] You seem anxious. There’s no reason to be anxious. Maybe you should see a psychiatrist.

Me: [Angry] You’re telling me the disease is unchecked and you wonder why I’m anxious?

The first doctor I fired. The second I kept. It was a close call but I kept him. Let me explain.

In the scenarios above, the first doctor, a rheumatologist, flunked because he not only sucked at communication, he lacked intellectual curiosity. Underneath my distress I didn’t think I had lupus, I didn’t know what I had but it wasn’t lupus. He didn’t care. He wasn’t going to discuss it with me. He was already thinking about his next case. Deal breaker.

Doctor number two, also a rheumatologist, had all the right credentials, a super-sharp mind and the curiosity of Sherlock Holmes. He was more scientist than clinician. Doc 2 probably communicated great with lab rats; it was people he couldn’t handle. His nursing and office staff were tops, always accommodating and respectful of my time. He would listen to me as long as I reported ‘just the facts’ like Mr. Spock; I was a ‘fascinating case’ (how many times have you heard that old line?) and thus worthy of his attention.

Keep him or let him go?

My options weren’t as great in Buffalo as they were in New York City. There were maybe two other rheumatologists in the area capable of dealing with my condition and they were both trained by Doc 2.

A few more things to keep in mind:

• If you are in doubt, interview several doctors as if they were applying for a job and you are the employer. If you don’t feel comfortable with your doctor or what s/he is telling you, get a second opinion. Don’t even worry about hurting anyone’s feelings. They are professionals and can handle it. If they can’t and give you a hard time, run, do not walk, to the nearest exit.

• Only the actual physical examination needs to be done in the examining room with you in a hospital gown. Any good-enough doctor would allow you to change into street clothes and sit comfortably in a chair for the important post-exam conversation.
• If you want the best, search for your doctor among the medical faculty of a teaching hospital. Medical centers tied to a medical school, teaching hospitals are where the medical students and residents do their training. The faculty who teach and supervise there know the latest diagnostic procedures, tests and treatments because they have to teach it. Putting up with the gaggle of med students (who make Doogie Howser look like a geezer) is worth it as long as your doctor hears you.
• A good-enough doctor will admit when he/she doesn’t have the answer but will work with you to figure out a plan, maybe even try something experimental if you’re willing.
• Trust your gut. Filter out what others say, focus on what your physician is saying and make your own judgment. Don’t micromanage your doctor, but don’t just be a Yes person either.
• A good listening doctor can show compassion without getting all touchy-feely. If you need someone to pet you and say “Poor baby,” (and we all do) go to your mother, a friend or your spouse. Don’t expect it from your doctor.
• Remember that doctors, just like the rest of us, are not perfect. If you found one who is good-enough, celebrate and get to work.

So I kept Doc 2, even though he had the social IQ of a kumquat. He was a leading expert on my disease and as long as our conversations focused on that we were good. We decided on an experimental treatment that (knock on wood) worked. He’s a big reason I’ve been in remission this long. Go figure.

An addendum: Since first publishing this article I realize I’m so close to this subject I may think I’m communicating the subtleties of developing a working relationship with our doctors and I missed a few points. First, Doc 2 was not a warm fuzzy guy, but he wasn’t nearly as bad as Doc 1, e.g. he was not condescending and he did hear me. His lack of warmth was not a deal breaker for me while it could have been for someone else. There is no right or wrong here. We did have a ‘talk’ to air out the relationship so we could understand each other and move forward. Secondly, I failed to mention that having a good therapist during the entire diagnostic process and after was important to me. It wasn’t the referral to a psychiatrist that was amiss for either Laura Hillenbrand or me. It was the idea that our not-so-good doctors were implying that we were mentally/emotionally out of control and they couldn’t handle that. This subject is a post all by itself. And thirdly, this post was inspired by the comments from Five Rules For Living With Chronic Illness. Thank you for your comments, questions and stories.

Photo courtesy of wenzday01 via Flickr

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    Last reviewed: By John M. Grohol, Psy.D. on 24 Jun 2009