What To Say & NOT Say to Narcolepsy Patients

by julie on July 2, 2013

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!

{ 25 comments… read them below or add one }

Peter Mansbach July 2, 2013 at 7:03 pm

Great suggestions, and most of them apply also to people with circadian sleep disorders. The question I struggle with is this: treatment takes a lot of effort, and for many people they push through a lot of pain and sleep deprivation before it succeeds. Yet for many it never succeeds. Do you tell patients starting out that it may not succeed – as we do on our web site – and have some of them not make the full effort? Or do you say, as many doctors do, that treatment always works, just stick with it – and then people feel like failures, and sometimes push themselves into illness?

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julie July 2, 2013 at 7:13 pm

Peter,

Great comment and question! My personal beleif is that it’s important to give hope but also set reasonable expectations – aka this could work, but it may not.

Unforunately, sometimes there are no good solutions – especially for illnesses like IH and Circadian Sleep Disorders. I think not having good solutions makes doctors uncomfortable and patients angry, so doctors tend not to want to address cases that they can’t “fix.”

No patient should feel like a failure. It’s a failure of medicine/science, not individuals. I think your approach of letting patients know right away is a good call.

Thanks again,
Julie

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John June 3, 2014 at 8:42 am

It is wonderful to emphasize that the disorder and its symptoms are not the fault of the patients (of which I am one), but with sleep disorders it is especially important to stress the fact that there are things that the patient needs to do to minimize the symptoms, as well as things that can undermine their efforts to be as productive as possible. Speaking from experience, it is very easy to adopt a fatalistic attitude, believing that there is nothing you can do and that it will never get better. This can lead to depression, which then compounds with the narcolepsy to make you even more tired and less motivated and productive. I don’t want to say that patients use narcolepsy as an excuse, since that implies that they are using the excuse for selfish ends to get what they want. Rather, it is feels like a hole that we forget forget how to climb out of, and need to be reminded that we do actually have power over this disorder and our lives.

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Tamara Sellman July 2, 2013 at 8:29 pm

Oh and never say, “well at least you don’t have cancer.” Ever.

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julie July 2, 2013 at 11:55 pm

Totally agree, Tamara! My doctor once said, “It could be worse.” While he was probably right, it certainly didn’t acknowledge the challenges of narcolepsy.

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Makky's Mom July 3, 2013 at 11:54 am

I get that ALL THE TIME when talking about my young daughter with a severe case of narc and cat. “At least she isn’t dying! It could be worse” is a common comment. Perhaps it’s because people just don’t know what else to say…

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Micah Hunter July 2, 2013 at 9:00 pm

I hate it when doctors tell me to exercise and eat better in a tone that suggests that will cure it. I know that doing both is good for your body but I also know that doing it is not going to make narcolepsy go away. I think when doctors have narcolepsy patients they should work with the patients on detailed day to day plans and small daily goals to achieve. The doctors I’ve had all pretty much said “here’s the meds, live a healthy lifestyle, and call if the meds stop working!”

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julie July 2, 2013 at 11:56 pm

Good point, Micah! I agree. I often say narcolepsy improves my life generally, but is not a cure for my symptoms. I’m sorry to hear your doctor is fairly hands off in the treatment process. Hang in there and thanks again for your comment.

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Makky's Mom July 3, 2013 at 11:53 am

Even though I haven’t gotten a diagnosis of narcolepsy or any other sleep disorder, I was evaluated with sleep studies last year. I was in the grey zone between pathological sleepiness and what’s considered within the norm. After explaining to the sleep doc that this had not been my first pit-stop for help – that I had optimized my iron level, my thyroid, my nighttime sleep and general sleep schedule, stopped working nightshifts, no longer have little babies that keep me up at night, eat better, and had even taken 2 full years of antidepressants to get me more motivated and energetic about life – the ONE THING he latched onto was the fact that I wasn’t exercising regularly (as in going to a gym). He said “well, you need a gym membership. If you just start fitting daily gym time into your days you’ll find you have more energy!” Oh-My-Gosh – I could have ripped his tongue out! It was like he was totally minimizing my sleepiness and basically blaming me for all my complaints and saying I wasn’t doing what I needed to do to feel better! I was so NOT impressed! I get it that exercising regularly can (and does) help, but it isn’t “THE ANSWER”.

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Audrey July 3, 2013 at 3:31 am

Thanks for asking, Julie.

I heard someone say recently that they were told “narcolepsy gets worse with age” and this made me think. Mine has gotten better with diagnosis and attentiveness and care, not worse. And sometimes it’s acute and other times it feels like it’s remote. So, I think they could say “Narcolepsy symptoms can fluctuate over time and throughout your life. It’s great to take note of influences that seem to make it more accute, and less — you will learn to guide yourself well if you pay attention.”

Also, I think it should be said that Narcolepsy is unique BUT like many other disorders, stress is a core contributer to how strong the symptoms are. So, learning some stress reduction practices can be very supportive.

I wish my doctor had told me that, while Narcolepsy is not psychological, it does affect so much of life, and therapy can be a good way to reflect on that and move forth with more understanding.

Also, I wish my doctors had told me about Narcolepsy Network and the annual conference. It took me years after diagnosis to attend a support group, and a good while after that to discover NN and the conferences.

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julie July 3, 2013 at 4:04 am

Audrey –

These are fabulous suggestions! Stress management is something I’ve never paid much attention to, but certainly should. Something just clicked for me reading this. 🙂

I agree, support groups, therapy and the NN conference should all be important resources mentioned early on. I know I’m still trying to get the word out about my book to sleep doctors to let patients know about this resource too.

Here’s to a brighter future! Thanks again, Julie

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Andrea July 7, 2013 at 6:04 am

I love that whole quote, Audrey, and I definitely second that about stress management. Although I often say that nothing makes narcolepsy better, stress is one thing that definitely makes it worse. (By “nothing” I mean no simple lifestyle changes, no little tips or tricks that might help a normal person sleep better, like limiting computer time before bed. Nothing that a well-meaning friend might suggest.)

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Laura July 3, 2013 at 5:21 am

At the moment, I’d be happy if my doctor would say ANYTHING to me! He scheduled my first follow-up appointment five months after my initial appointment, and he’s been unreachable by both phone and e-mail (despite lots of attempts on my part). He rescinded my driving privileges, which is fine, but he hasn’t made himself available to fill out the medical paperwork that DMV requires. His office has confirmed that my sleep study results are back (about a month ago), but I still don’t know what they are, because my doctor hasn’t called or released them to a nurse to call me. I know that’s not really what the post is about, but I’m just so frustrated at the moment. Forgive the venting!

My primary care doctor has been really great. Every time I see him, even if it’s for an issue unrelated to sleep, he asks how things are going, and how I’m feeling. I would definitely put that under the “things to say” category. It always helps to feel like your doctor cares how you’re doing, but I think with any illness where you have to focus on symptom control rather than a cure (like narcolepsy, IH, circadian disorders, etc.), it’s especially key to check in at every opportunity.

I’d also echo what Audrey says about suggesting supports for managing–be it therapy, support groups, etc. I’ve seen three sleep specialists in the last two years, and none of them mentioned word one about anything like this. The things that have helped me the most–keeping a symptom diary, taking naps, changing my diet–have all been things I’ve discovered on my own or learned about through fellow sleep disorder suffers or support groups (and some from my primary care doctor). I think it’s also important that a doctor ask what your goals are–do you need accommodations so you can work or go to school, are you interested in trying lifestyle interventions in addition to / instead of medications–rather than simply prescribing a “one size fits all” program.

Great post, Julie! And how cool is that doctor that he would ask that question during the panel discussion!

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Corey July 3, 2013 at 9:56 pm

I was newly diagnosed and the only information on Narcolepsy I had was what I had researched, I was very held up on if I could ever have children. When I asked my doctor he told me I was too emotional to discuss it and we would talk later about if it was a possibility.

I just wish that they could provide better information then a pamphlet I received on my second follow up.

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B.K. July 6, 2013 at 5:54 pm

I think doctors should never make any reference that Narcolepsy is not life threatening, just altering. I used to think it was okay but recently this year my teenage daughter did almost take her life because of her Narcolepsy and all of its complexity. I think support is essential for all PWN. Unfortunately we have not found that any group for our daughter over the last 8 years. It seems that the support groups at least in the Chicagoland area are for adults. So that leaves family, friends, and private counseling.
We all need to have hope and push to find the best possible treatment available. It is exhausting and frustrating at times but there are wonderful medical people who are out there that want to help!!! You just have to keep searching till you find them:)

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maureen July 7, 2013 at 6:46 pm

I just wanted to pass comment to B.K.
I just wanted to send you all a Nhug (a narco hug) all the way from Dubai. Please let your daughter know that from across the big pond someone is thinking of her she is not alone. xxx

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Ian July 12, 2013 at 8:24 pm

About the “can’t” thing. I struggled with that one for quite a while. Can’t is debilitating. What finally pulled me out of that pit was realizing that there is a difference between can’t and “that’s probably dangerous so lets skip it unless its an emergency or I have people I can trust present spotting me”. It’s not that I can’t swim or can’t drive or can’t skydive (I’ve never actually tried that last one) or can’t ride a motorcycle. Some of those activities having varying levels of risk that are increased with narcolepsy and I’m making a personal choice not to engage in the activity because of the risks involved. I could still drive a car in an emergency even though I stopped driving over the risk. Making a choice is way different than can’t. I do miss swimming but with cataplexy I’m not willing to try it without a lifeguard that I well trust with my life and trust to pay attention.

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julie July 12, 2013 at 8:28 pm

This is great perspective, Ian. I’m so sorry to hear your cataplexy presents challenges and takes activities away at times. I find that it really depends on the day and how my cataplexy is at that time. Recently I went water-skiing – which is something I NEVER imagined I would be able to do with cataplexy. It was amazing – yet I chose that time carefully. I couldn’t have gone the day before because my cataplexy was much worse. Hang in there and keep your great perspective – it’s inspiring! Julie

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Ian July 13, 2013 at 10:21 pm

Water skiing – wow! There is a balancing act between risk, fear, other peoples fear, and having a life. Some activies make sense and some are really bad ideas. I realized after the fact that for a group downtown segway tour i could have reasonably done the in the parking lot practice but with acutomatic behavior & such the downtown tour in and around traffic beyond levels of risk I’m willing to take. Next time I think I’ll try the parts I can do (without undue risk to myself and others as observe forthe rest). I can imagine water skiing (assuming trained people along to fish me out). I spent years not getting what my wife meant about it not being safe to take the kids to the pool until she had to hold my head above water for 4-5 minutes. I got excited playing with the kids and had toral cataplexy attack. that was one of more terrifying ones. I realized then that if I wasn’t careful, I could die. There are other activities that are fun and safer – earlier this year I started playing disc golf with my co-workers. Fun and safe at the same time. Ian

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Kris August 7, 2013 at 7:24 am

My diagnosis took 15 years. Things my doctor said to me: “I don’t know anything about narcolepsy but I’m pretty sure you don’t have it.” and “We’re all tired these days. We live busy lives.” and “I’d rather have narcolepsy than cancer.” Another doctor: “Let’s do another sleep study and see if you still have narcolepsy.” (That one cost me $700 out of pocket). Doctors in my area are still in the dark on narcolepsy and it’s getting real old. They won’t listen when I try to educate them. They tell me to double my stimulants and work full time. They won’t excuse me from jury duty. It’s so hard to keep a positive attitude after all these years (30 years since first symptoms).

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TheDreamer August 19, 2013 at 10:33 pm

How about not every problem I come to you with whether its a new problem or a problem that I’ve had before is not now a side effect of Xyrem, just because you’re opposed to the drug.

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Happy2BNappy February 6, 2014 at 1:26 am

I’m glad you put the comment in about not suggesting exercise. I remember the day I was diagnosed with narcolepsy, my doctor told me that what I really needed to do was to exercise for an hour around 4pm every day. When he said that, it told me that he had absolutely no clue whatsoever what it was like to be as sleepy as I was. He then prescribed Provigil, and told me that it was going to be amazing, it would basically fix my narcolepsy completely. Needless to say, I was unable to tolerate Provigil. Fortunately that doc retired and I ended up switching to a much better doc who was able to find a medication regime that was effective. I am now able to exercise regularly because of my effective treatment…but to suggest exercise as a treatment prior to relief of symptoms is absurd. BTW, I exercise because I like it, it really doesn’t have much impact if any on my narcolepsy.

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Sarah Edgeworth December 1, 2014 at 9:14 pm

Here are some of my memorable quotes from doctors. Sorry if any of them have been said already, but I cannot see the comments to this post.

“I am so excited! You are my first patient diagnosed with narcolepsy!”

“Here, I Googled some information on narcolepsy for you.”

“I have never seen anyone have a cataplexy attack before; can you try to have one so I can see what it’s like?”

“If I make you laugh, can I get you to fall?” (While telling corny jokes throughout the whole appointment).

“You don’t look sick.”

“I’m sure you are fine.”

“Narcolepsy, what’s that?”

“I get that you are tired, but everyone in life has obstacles, you just have to do it.”

After trying numerous medications and not having any success…
“So, what do you want to do now?”
-I want you to tell me some of your ideas and be knowledgeable about treatments available (beyond pills).

Please do not spend the whole appointment having me educate you about narcolepsy and cataplexy. Take the time to educate yourself. It is very frustrating having to waste time and pay doctors who know nothing about your condition.

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Amanda May 16, 2015 at 2:54 am

How bout having a doctor not telling a patient that has been diagnosed, that he “Doesn’t think you have Narcolepsy, even if the tests show you go into naps within a few minutes; You’re making yourself like this by not being on a early am wake up schedule. I don’t think anything is wrong with your brain.” Most horrible doctor experience of my life. How Mr. Dr. do you then explain the cataplexy?

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Gladys Viddaurri October 5, 2018 at 4:09 am

Dear friends, family and CO-WORKERS, please leave the laughs and jokes to the narcoleptic person. Narcolepsy can strike some as being funny at certain times. It is not funny or amusing! Oftentimes it a struggle.

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