Thoughts on a doctor’s letter to chronically ill patients

I recently came across a blog post on MedPage Today titled “A Letter to Patients with Chronic Illness.” Although it was written nearly 15 years ago, it’s as relevant today as it was then, revealing oft-obscured insight into the frame of mind of our doctors. Its author, “Dr. Rob,” shares his experience, understanding, and advice for improving doctor-patient relationships.

Before I started reading it, I’ll admit, I had a pretty large chip on my shoulder. I’ve spent the better part of two decades living with sarcoidosis and several other health conditions. During most of that time, I’ve also been advocating for the chronic illness community. I’ve had dozens of doctors who didn’t listen, believe me, or help me, so I was ready to fight back against that negativity.

However, Dr. Rob’s letter is disarming from the start: “Dear Patients: You have it very hard, much harder than most people understand.” It’s rare to encounter that level of sympathy and self-awareness from someone outside of the patient community. Yet this doctor recognizes our struggles — not only with the symptoms of our diseases, but with all the ways they affect our lives.

But his next point is what’s most surprising: “You scare doctors.”

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We often wish we had the type of doctors we see on television: the ones who can look at an extremely complicated patient, do exactly the tests needed to confirm their brilliant ideas, and fix us — all within a 60-minute episode. Dr. Rob explains that physicians wish to be those doctors, too, but complicated conditions like ours make it clear that they’re not.

The fear, he explains, is that we recognize and remind them that they are “normal, fallible people.” When we come in with chronic, incurable, difficult-to-treat diseases, doctors “have to leave behind the illusion of control, of power over disease.” This makes them feel insecure, frustrated, and angry about what they are unable to do. That can turn into resentment, which then gets directed at us.

The first time I read this, the chip that never fully left my shoulder began to shout: “That’s not fair! It’s not our fault that you can’t fix us! How do you think we feel? You have a 15-minute appointment when you can’t do something? We might have 15 minutes in a day when we can!”

But with a few deep breaths and a second reading, I realized that he isn’t offering a defense or an excuse. He’s not saying this hostility is acceptable; he’s simply explaining the thought (and feeling) process so we can better understand where they are coming from, just as we want others to better understand us.

Developing a partnership

Bearing all that in mind, Dr. Rob offers practical advice for patients to develop better relationships with our doctors:

1. Advocate for ourselves, but “don’t come on too strong.”
2. “Show respect.” (This works both ways.)
3. “Keep [our] eggs in only a few baskets.”
4. “Use the ER only when absolutely needed.”
5. “Don’t avoid doctors.”
6. “Don’t put up with the jerks.”
7. “Forgive us.”

Taken together, this all seems like good advice for any relationship. Do unto others, if you will. And that really is the best objective, to develop a partnership with our doctors. We each bring a different type of knowledge and experience into the exam room; successful treatment can only come from honoring both.

In light of that, I’d like to reciprocate with a bit of advice for doctors who treat patients with chronic illnesses:

We’re frustrated, too. We’re intimidated. We’re overwhelmed. We’re scared. We’re hurting. We’re exhausted — and this is our life, 24/7. By the time we get to you, we’re desperate. But you can be the lifeline that we need by doing the following:

1. Practice active listening. You know those miracle TV doctors I mentioned earlier? The way they usually figure things out is by reading between the lines: noticing a twitch or rash that a patient didn’t mention, or identifying a symptom the patient thought was just a quirk. This is where your expertise is vital.
2. Believe us. Sometimes our symptoms are invisible, and sometimes the test results don’t reflect our experience. That doesn’t mean we’re lying; it just means it’s time to delve deeper. It’s time to think zebras.
3. It’s OK to say, “I don’t know.” Of course, we come to you for answers, but we have great respect for someone who can acknowledge their limitations. Whether you consult with a colleague or refer us to someone else, you’re still a valuable member of the team.

I’d also like to add a thank you to Dr. Rob for pulling back the curtain and revealing the vulnerability behind the overly confident doctors we often see, and to the wonderful doctors who set their egos aside to put their patients’ needs first. You give us all hope for better days.

Note: Sarcoidosis News 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 Sarcoidosis News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sarcoidosis.