While speaking at SLEEP 2013, a doctor asked a great question: “Are there things I should or shouldn’t say to my narcolepsy patients?”
The question caught me off-guard. It was so… thoughtful! Our panel provided some tips. Please add your suggestions in the comments below.
What doctors should Say:
- Set reasonable expectations of working together long term to find best treatment. No medication is a cure. Let patients know upfront that there are no perfect solutions, but that you will work together to make improvements and adjustments in the months and years ahead.
- Prescribe naps for patients who find short naps refreshing. Empathize that napping in certain circumstances (like school or work) may be challenging or embarrassing. Talk logistics.
- “One day at a time” – patients and family members’ minds may spiral ahead to distant concerns and fears for the future. Encourage approaching narcolepsy “one day at a time” – helping everyone re-focus on immediate priority concerns.
- Support system: ask patients about their support system of family, friends, teachers, supervisors, school counselors, etc. Attending therapy or support groups can be very helpful.
What not to say:
- “I know how you feel, I was really sleepy once…” People with narcolepsy experience extreme sleepiness daily, making comparisons to your unrelated experience with sleepiness is not reassuring.
- “Because you have narcolepsy, you can’t do _______.” Okay, yes, there are a few things people with narcolepsy are categorically excluded from doing, such as commercial driving and certain military work. However, please be careful in setting limitations on patients, especially young people. No two people with narcolepsy have the same experience . Making broad generalizations about “people with narcolepsy’s capabilities” will never be accurate. Perhaps you are unsure about your patient going rock-climbing, attending medical school, driving a car, or running a marathon. Fair enough. Please phrase your opinion carefully and with hope, “Let’s focus on finding optimal treatment now and re-address ________ later.” A little hope goes a long way!
- “You’re tired? Get some exercise.”
- “You’re tired? Perhaps you’re lazy.”
Check out: Tips for Talking with your Sleep Doctor
What else should doctors say or not say? Comment below!