Becoming a Doctor with Narcolepsy
The following is a guest post sent to us by a young woman with narcolepsy who is in her third year of medical school. She reflects on making a tough decision: whether or not to disclose her diagnosis publicly as a future physician.
While I was diagnosed just a year and a half ago, I’ve had symptoms of narcolepsy since I was 15 years old. I’ve known something was wrong since I was a sophomore in college, but a part of me was too scared to admit it. I downplayed my frustrations and tried every trick I could think of to alleviate my symptoms.
I slept more at night and took intentional naps. During lectures, I would bring a thermos of coffee and pinch myself repeatedly 
to try (and fail) to stay awake. On long drives, I would blast the A/C, scream at the top of my lungs, sing along with the radio, and slap myself across the face. Short of a power nap at a gas station and an energy drink (packed with who knows what chemicals), nothing worked. At the suggestion of my family’s physician, I tried chugging bottles of water during the day and eating less carbs. Of course, that didn’t help either.
to try (and fail) to stay awake. On long drives, I would blast the A/C, scream at the top of my lungs, sing along with the radio, and slap myself across the face. Short of a power nap at a gas station and an energy drink (packed with who knows what chemicals), nothing worked. At the suggestion of my family’s physician, I tried chugging bottles of water during the day and eating less carbs. Of course, that didn’t help either.Even with all of these blaring signals, I still let other people’s misconceptions of narcolepsy become my own. “You’re fine…” “You’re healthy…” “You must just need more sleep than most people…” These were the kind of dismissive comments I heard on the rare occasion that I confessed what little control I had over my own body. It took only four years of high school, four years of college, one degree in Biochemistry, $32,000 in student loans, and one year of medical school for me to realize that the sleepiness of narcolepsy doesn’t necessarily look like the character in Rat Race or the dog in the Rusty the Narcoleptic Dachshund video.
Well, now I know. I find myself simultaneously empowered and imprisoned by the knowledge of my diagnosis. All in all, my life is changed for the better. Because of my narcolepsy, I was forced to learn the extent of my own resilience and determination. I’m also lucky that medication has been extremely effective for me. I can also scream “I told you so” to every person who ever suggested or hinted at the fact that it might be in my head. Most importantly, I may have saved my aunt’s life. As it turns out, she also has narcolepsy. And just like me, she let other people’s ill-informed opinions dismiss her own concerns and frustrations.
In 17 months, I will graduate from medical school with an MD—a long-time dream of mine that was almost delayed because of narcolepsy. I want nothing more than to share my story with the world and connect with others who’ve faced the same challenges. But this diagnosis has become my secret to keep. It’s as if Prince Charming awoke Sleeping Beauty, only to strap an iron ball and chain on her ankle. My family tells me I have too much to lose by sharing my diagnosis. Due to its competitiveness, my dreams of becoming a certain type of 
physician would be ruined if I gave residency programs a reason to view me as a liability instead of an asset (even if technically illegal). Each time I am reminded of the cost of my authenticity, I can feel my cheeks begin to burn. I want to scream, to kick, to cry.
physician would be ruined if I gave residency programs a reason to view me as a liability instead of an asset (even if technically illegal). Each time I am reminded of the cost of my authenticity, I can feel my cheeks begin to burn. I want to scream, to kick, to cry.The sad reality is that even as a woman about to enter the medical field, I’m still limited by the misconceptions of narcolepsy. Like Julie Flygare says, we hate that our condition is so misunderstood, so we say nothing. I hope that someday I will be able to help break that cycle.
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Don’t reveal cause I had to give up a nurse because of Narcolepsy. You are awesome and you’ve got this
So we allow the stereotype to continue that people can’t have jobs and be successful? How does that help?
It helps us stay employed. My first neurologist who diagnosed me recommended that I not reveal my condition to employers. Sometimes I have sometimes I haven’t. Overall, he was right.
I am a zambian medical student and am currently in my second year of premedical sciences and I was recently diagnosed with Narcolepsy too. I’ve had the problem from childhood too and suffered being misunderstood and alot more disadvantages in school life. My neurologist advised on taking Methylphenidate three times a day but the drug is rare in my country. Is there anything I can do to help myself with my condition?. Thank you.
Hello just wanted to ask which hospital u went to cause I have the same condition but it seems like most hospitals in Zambia have no idea about narcolepsy
I think it would depend on the type of medicine you practice. Obviously , to me, anything that has you taking overnight shifts would ruin your sleep hygiene. I’m a nurse with narcolepsy. I never had a problem telling my bosses about my medical history. They never seemed to mind, although they would say things like, “I know someone with narcolepsy, just take a pill and everything is fine.” I’m on xyrem, I love it. I want to take it every night for the next 30 years. (I’m 63 now).
I got through nursing school and looking back at the books, there are highlighter squiggles on every page, travelling off the side of the page. I’m amazed that I graduated. Although some people say narcoleptics aren’t completely asleep and can hear what’s going on. I don’t think its any different than any other sleep, so who knows?
I started having problems staying awake when I was a teenager. There are about 50 movies that I have never seen, because the music starts, and I pass out, and wake up when its over. Don’t ever tell your doctor you are so tired. I got every anti depressant known to make because to be tired, means depressed. I never thought to say “I’m so sleepy all the time.” I just said tired.
Get a good idea of any specialties you are interested in. A good day time schedule would work with many specialties or even GP. Maybe become a pulmonologist? You could be a great sleep doctor!
Thank You!! I see your taking xyerm. I have just been diagnosed. The sleep doctor has just got me started on meds.
Hi Lee Ann, I’m also a nurse and I’m curious what type of nursing you do. I was doing rotating shifts when I was diagnosed with narcolepsy. Looking back, I had signs of narcolepsy and cataplexy during nursing school, but it wasn’t until my friend, who is a PA, gave a name for my muscle weakness as cataplexy, when I realized that I might have narcolepsy. I recently switched to an all day shift, no weekend job in the hospital, but part of me wonders if I could ever do rotating shift again. I would like to try my hand at ICU/ED, but am afraid I won’t be able to handle the schedule. Any advice would be much appreciated!
I am an OR nurse with narcolepsy. I was diagnosed two years ago at the end of my senior year in college. I felt the same exact way and at first I kept it all a secret from my co-workers in fear of being misunderstood or losing my dream job. One day one of the other OR nurses openly brought up her narcolepsy and how she’s fine now because she takes medication for it. I immediately told her about my narcolepsy and she encouraged me to tell my nurse manager and a few others for scheduling purposes with only working days and not taking night call, etc. She disclosed her narcolepsy when she had her interview, while I did not. Either way, everyone was very supportive and did not judge us. I completely understand not wanting to be considered a liability as that’s exactly what I feared with working in the operating room. But with telling a few important people months after being hired, and after they were able to see that I can perform my job just like anyone else, I now have people that would support me if anything ever came up in the future regarding my narcolepsy and my job. If something ever did happen at work, and someone found out about my narcolepsy after the fact and tried to use it against me, I feel it would look a lot worse on my part for keeping it a secret from everyone. So now with that perspective, I’m glad I have a few people at work that know and that can support me. Also, my cousin is a med student with narcolepsy and is dealing with the same exact thing. She’s not comfortable telling others yet either. But there are a lot of us out there for support and I hope my story helps!
As a Nurse Practitioner who also has narcolepsy, I have chosen not to disclose my condition to my employee. I also treat sleep medicine patients so I also have that experience, which has made me empathic and extremely understanding of the toll that narcolepsy can have on a patient’s life. It’s a tough decision to make whether to disclose or not…I wish you lots of luck in your medical career.
Make your decision AFTER residency!
As a doctor with narcolepsy, I have never not been forth coming with my diagnosis. It’s who I am. Narcolepsy does not define me but it is part of what makes me ME. It will never go away. I will have really bad days. I’ll also have really good days where I don’t seem to be “sick”. Medicine without having a chronic disease can be physically and emotionally exhausting. Look up all the research on physician burnout, and it starts during residency and continues on. Look at how many doctors are leaving primary care, or medicine in general because the balance of work and home life is not possible to obtain with our current health care system. Will you face opposition, sure, but you were going to face that anyway being a woman. There is still a bias towards male physicians wether we like it or not. Standing up and saying I have a chronic disease, this is how I manage it, this is how it makes me a better doctor will serve you better in the long run. Give the world a face of what narcolepsy really is. Don’t let the rest of the world think our disease is comical or what is portrayed in movies. I am an internist by training. I diagnosis more sleep disorders than many of my sleep specialty counterparts, because I take the time to do a good history, and I know what I’m looking for. I also work in academics where I have the ability to teach 500 students a year the importance of a good sleep history and what narcolepsy is. I want people to associate me with my disease and see that it’s possible to be successful, that it is possible to live a “normal” life, that really anything is possible. I’ve helped two students be diagnosed and get help, because they knew to come to me to ask about their sleep problems. I’m proud of what I have accomplished, and I did all of it while being a narcoleptic. We congratulate people who succeed despite cancer, MS, lupus, diabetes… insert disease name. Why not narcolepsy? Your challenges will be a little different in residency, but nothing you can’t handle. Be proud of who you are, I know we are.
I love this reply. Though I haven’t had the courage to tell my employer I have a “sleep disorder.” Regardless of this, It took me 6 years to finish my undergrad. Not because I was not capable, but because I did not ask for help or truly disclose to anyone the extent of my sleepiness. Now looking back, I wish I would have spoken up. Maybe 6 years could have been 4. I most likely would have been able to make a schedule that worked for me, and not sleep through neuro.????
Anyway, there may be stigma attached to N, but if it were me, I would want to be apart of a medical group (or at least my superiors), who were educated on sleep disorders. If the group could not understand that I am still a capable person, I would question if these are the type of people I want to surround myself with.
Be an advocate for the rest of us, or whatever specialty you choose. Who knows you may become the individual who has all the sleep patients sent to them like the individual in the previous post.
I went through school with lots of medications stubbornness and caffein. It took much longer than it should. I was med free for years after school, part because of liver stress but mostly bc of health insurance Thought I was doing ok, but realize now the last 10 years have been a haze. On meds trying to piece together my unfinished business right and left. Finding a balance where I am able to work and have a social life, fulfilling obligations and expectations have been a challange. I wish in hindsight, that I would have kept my stress load down. I can not seem to recover
thank you for posting this. i’m going to school to be a surgical assistant i have put off being diagnosed even though i’m certain i am narcoleptic due to fear. thank you
Alison: I’m also a doctor with narcolepsy, but I was diagnosed a few years after being kicked out of residency due to lots of issues that were all blamed on me though I was also bullied by other residents, attendings and admin as well. I tried so hard but I couldn’t control my irritability when I was talked to disrespectfully or was treated unfairly. Which happened a lot… Were you diagnosed before residency/medical school? How did you get through it? I’m not board certified and it makes life so hard. I still don’t think I’d be able to go back to residency because how can I take call, work 24+ hours in a row? So far my narcolepsy has completely ruined my life because it wasn’t diagnosed early enough. I’m currently unemployed and have no direction to my life. I spent so long fighting for this career for it to be torn to shreds. I’m too tired and upset to even think about going back to another minimum wage job but I’m at risk of becoming homeless within the next year. People want to help those who don’t need as much help as me. Even the sleep advocates just want to focus on the success stories or those who just need a little boost.
Did u ever get any help Alison?? I’m in my third year preparing for Step and I’m diagnosed but struggling. I’m considering delving into self employment in case medicine becomes too demanding..
My 87 years old father , 45 years old myself a general practitioner and my 16 years old son are all narcoleptics.
Definitely it affects our daily routines but still we have to endure it and live with it.
Your comment really resonated with me. I’m also a doctor in training and was diagnosed with narcolepsy during medical school. Would love to connect with you and hear more about your journey!
THANK YOU FOR THIS!
Tears streamed down my face as I reflected on the challenges I have faced over the past 7 years battling narcolepsy. Despite pursuing a degree in psychology and contemplating medical school, I have been plagued by doubts due to the hardships I have endured in school and as a medical assistant. Co-workers and supervisors have belittled me because of my condition, going as far as sabotaging my positions. It is disheartening to be treated unfairly for something beyond my control. During my time as a medical assistant student, the program director bluntly informed me that I would not succeed due to my condition. This was the first time I had been told I couldn’t achieve something, and it hurt deeply. However, I was determined to prove her wrong. Despite the obstacles, I maintained a perfect GPA and earned the title of student ambassador. Unfortunately, discrimination reared its ugly head once I entered the professional field! But again thank you for the encouraging words. This was needed!
My daughter too was diagnosed last year with narcolepsy. She is twelve years now. Thanks for the encouragement messages. I believe now she is not alone.
Try to understand her interests in life and push her in the direction In which she is most alert and alive and free to be herself. Once she has self motivation, she will do alright. But never make her do something she doesn’t want to. Because she will beat herself up for it
If you can get through your residency, I think you’ll do fine! Just probably don’t go into surgery!
Oh, and tell a neurologist resident! Or tell whoever you want. Your co-students could learn volumes of valuable information from you!
When I hear of PWN becoming doctors and nurses I ask myself what am I doing wrong? Am I not pushing through my illness enough?
Laura, Please remember than narcolepsy is not a one-size-fits-all diagnosis. Symptoms affect each of us to varying degrees and some folks find more improvement with medications and lifestyle changes than others. Your experience is still very valid and true. I believe that each and every person with narcolepsy deserves to feel proud for the invisible adversity they are overcoming daily. Keep fighting!
Julie, Thank you for your insightful words. I remember going to our first Narcolepsy Network conference with my 13 year old daughter who has narcolepsy. One session was about careers, and the speaker was saying that you can be whatever you want to be. I thought, “well, no, my daughter cannot. She has severe limitations because of her narcolepsy. She can’t even stay awake in class, how can she study to become a doctor?” Over the past 3 years, she has amazed me. She has tried various medications, adjusted her lifestyle, and is now a straight A student, along with being involved with various extracurricular activities. She does not make excuses, but makes choices. She continues to be limited in her ability to fully participate in some activities, but she has made choices and set priorities. I am so proud of her and encourage everyone to pursue their dreams and passions.
I am 66 and have been fighting sleep problems since I was in grade school. I was diagnosed with Narcolepsy in 1991 after a 4 car pile up. I struggled all my life with life and going to doctors to get answers like ” you work to hard” ” We all mis miles of the road on long trips” etc. I now here the same thing when I talk about memory loss. Also for 3 years before I finally got hearing aids.
All of the above says be honest, first for yourself you need to keep reminding yourself you have a real problem. Second no one will really hear what you say. I would guess you might get statements like ” we all feel that way as interns” ” yes Residency is tough on all of us”. If you are real lucky you will have a mentor who hears you and says ok how can we make this work?
You may loose some chances but you will have respect for yourself and no nagging fear that someone may find out.
GO GET THEM! THE WORLD IS YOURS TO SET ON FIRE. Use Julie as an example. Look what she has accomplished in a very short time. If I was a lawyer who knew her story and came up against her. I would say oh crap this is going to be tough.????
As someone with Type 1 narcolepsy (meaning I have cataplexy) for over 25 years, I spent many years contemplating a career as an MD. With onset at 13 and diagnosis at 16 (1993), I was alone, fairly uninformed, and unsure for what having a diagnosis like narcolepsy meant for my future. I still meet mostly parents now with that concern for their children. An MD was not the career I chose after multiple soul searches spanning years, but rather a mix of clinical research coordinator, patient advocate and counselor (via Narcolepsy Network involvement and relationships with industry), and behavioral neuroscientist. And I’m happy.
I spent years tracking down physicians with narcolepsy, both before and after making a decision to not pursue an MD myself. I have learned the most about “physicians/NPs/PAs with narcolepsy” from talking informally with physicians who treat other physicians with narcolepsy — these conversations have always been anectodal and off the record. I have been lucky to create strong relationships with a good number of sleep doctors over the years, and this is in part due to my long history as a young researcher and later patient advocate in this field.
It is important to know that there are a size-able number of professionals treating patients who themselves have narcolepsy (MD, NP, PA). If I were to generalize, no specialty is off-limits with a narcolepsy diagnosis, however, I am always quick to modify that with a quality of life statement. One must be happy with their quality of life in any career path chosen. Hence, I have advised and consulted with others with narcolepsy on their way to choosing between MD and NP/PA, and it is a difficult and personal decision.
All this said, I haven’t ever connected with, or heard of a case, of a doctor with narcolepsy who shared the same personal circumstances preceding the decision that I faced in college — teen onset, with cataplexy, pre-career diagnosis, and wanting to pursue an MD. I do look forward to the day when I hear from one!
For parents of kids with narcolepsy, there are no general limitations to the narcolepsy diagnosis itself; however, early knowledge of the condition, and the fact that the kids will know the experience of being a patient for far longer than any career they choose will likely influence their career choice in some way. If they do choose medicine and treating others, they must dis-engage from their patient role and learn how to be both patient and physician in a complicated healthcare system. Ultimately, this combined experience will likely positively impact their careers and patients they end up caring for, but it is a learning process as yet unidentified with a guided process to help them through.
I fully believe that everyone, with or without narcolepsy, should find careers that they are passionate about. All careers have moments where decisions made will have influence over the future. The author is amidst one of those moments, and for her personally, it is a moment that will forever stand out as she is newly diagnosed (in a relative sense) and appears torn in whether or not to disclose to whom and when, in fear of potential negative outcomes. As narcolepsy is a lifelong diagnosis, though, there will be multiple times in her life, both professional and personal, when she will have to decide if and when to disclose. In each situation, she will learn more about what is best for her personally.
While I try to steer clear of too much advice giving, making a decision and sitting in it for a few months to ensure one is certain is one I have offered in the past regarding issues with disclosure. There are a few other ways to weigh the situation as well including identifying what she personally feels is necessary in order to remain authentic to herself. As mentioned earlier, overcoming the conflicts of experiencing the healthcare system as a patient and physician-in-training are not easy to sort out on one’s own. And each person experiencing both has different motivations and goals from these two roles. It is important for her to realize where on the continuum she would like to be. And recognize that where she is now will be different than 5 years from now.
For anyone contemplating a career in medicine with narcolepsy, or looking for advice, or willing to share their experiences (anonymously, if needed), feel free to reach out to me anytime at sknarnet@gmail.com.
I understand where you are coming from because I too am often faced with do I tell or not tell? Then I remember that I am to be my own advocate and do not wish to be carted off to the hospital if I have a sleep attack nor do I wished to be slapped again if I have a cataplexy attack. Transparency for the most part has blessed me, even at work. (I too have recently finished grad school and switched careers so I get it) But if you ever need something like the ability to snooze it off, or have a flexible start time, it is best to be forthcoming. Failure to disclose and the unthinkable narcoleptic attack occurs, could possibly end your career before you begin. You have to give the hospitals a chance to be your support system.
Another Narcoleptic nurse here. Good on you for sharing your story!
I found out about my Narcolepsy while I was at uni studying nursing. It made so much sense! So I told my teachers etc and they were supportive. But when I got to working in hospital I decided not to say anything for the all reasons listed. And, to be honest, I didn’t understand it enough myself. But I didn’t cope, couldn’t deal with night shift and so on. So I left shift work and now work only days in a GP clinic. I told my new employer about my Narc and they have been wonderful.
I think Narc is about the journey – you’ll mess up, you’ll stumble, people might get annoyed at you, but you will make it. My experience has taught me that my (work) priorities are myself first and my patients second. If I don’t take care of myself, I can’t look after them.
I wish you nothing but success on your journey =)
hi
i am a physician wih narcolepsy, finished my medical school without medications and residency too but it was ouside usa, i have always been at the top 1% of my class untile i went to college, i didn’t do well as i used to but comparitvly i did well. my first cataplexy attack was after the birth of my daugter at 28, consulted few doctors who told me its just in my head.
after i was diagnosed i went into depression especialy because i moved to usa and now i have to do residency again !
for anyone out there who is thinking about surgery or any other residencies that is hghly demanding, if u r on med then u r fine in fact u will have less problems in satying awake at night when everyone else is strugling to stay awake. one more thing, in narcolepsy the more you work and stay active the better u feel the more you sleep the worse you get therefor i would not advise anyone to go to a residency program that need a lot of sitting quietly like pathoogy or radiology.
Hi Florence, I’m also a physician with narcolepsy. I too was diagnosed in my mid to late 20’s because my narcolepsy worsened and I started having full body cataplexy attacks. It was a really difficult and uncertain time for me and I’m really sorry to hear that you had to go through that on top of everything else. I also agree with your suggestions for residency. Definitely something to consider. Hope things worked out for you! Feel free to get in touch 🙂
The medical world still has much to learn about the realities of living with narcolepsy. I was diagnosed at 17 years old, almost 20 years ago now. Medication battle with insurance gets me down every beginning of the year. I constantly have to advocate for myself with a general practice medical doctor since Provigil/Modafinil is on a high abuse risk schedule. I can’t afford to see a sleep specialist anymore while I’m in school (again!) training to be an Occupational Therapy Assistant. I work days, study afternoons, and attend classes 5-9pm 45 minutes from my home. Life is challenging with narcolepsy but completely doable when there is understanding and supportive people around you. Never doubt yourself, or someone else will do it for you!
Hi, first than anything, sorry if my English isn’t very well, I’m still learning the language, I´m a Spanish speaker.
I’m from Chile and I’m studying to be a midwife, I really love the profession; that’s why a choose it. I was diagnosed with narcolepsy since 8 months ago. Just in the middle of my practises: and for me was like: “ok” I’ve been living with this since a wild, so I now I can, even without medication was hard but I can. I think than with medication this would be so much easier; and being woken up it is.
But is the only who star to be easier; socially, everything chance just because my “chronic sleepiness” have a name, when my teachers, mattes and family think I was loose, if I have a sleep attack was fine for them, because I was normal. But the diagnoses chance my life in so many ways because people are scared about who doesn´t know. Everyone I know stars to fill in the right to question if I have the right of keeping studying.
My college star to questioned my abilities harder than before, if for every student being “good” was fine, I have to be “almost perfect” for being acceptable; or in the opposite way some of my teacher say “I really didn´t have no expectation about you” so for them just with try was lie “it´s ok, she is illness we wait more for them”. So when I read you say that “my narcolepsy, I was forced to learn the extent of my own resilience and determination” I get it, and I really think ok, it’s not just me; we fight more than everyone understand because it’s not just the illness, no. It’s the social punishment for being ill. I´m narcolepsy, and you know what? Everyone knows it, and because of that I live scared about my university calling an “Ethical commission” to decide if I have the ability, courage and energies to keep studying; or even worse maybe I will never get a job when I will graduate, because people know it.
They say because of narcolepsy I put patients in danger; but I know isn’t true; because that is something else than narcolepsy push me to step up: my ability to self-criticism.
So keep fighting, change the world, you know you can. Just never allow anyone to question your skills to be a doctor; that’s it’s something who only you know it.
Narcolepsy scares as a shout to everyone, yes. Makes a few things harder to naps, you could be sure, but it does not define us.
Mari
Dear Medical Student,
I was so heartened to read your post. Narcolepsy is a very personal thing in how it affects one life so I will not superimpose my experiences on yours but please believe me when I say, your words bring back memories of how I sought to reconcile a mind capable of learning medicine but not awake enough to practice it at times.
I was diagnosed in medical school right soon after second year and it was a bombshell. I will not belabor the details but it led me to road I think you have traveled. The first few miles of it are surprise, then a happiness of knowing you can now be awake for at least 50% more time than you ever thought possible followed by a slow realization that you still may face limitations to what you can and cannot do because of a disease that no one can see, few can relate to and does not cause physical death but can cause the alteration of life-sustaining dreams and goals. It is hard to come to terms with a neurological disorder that leaves your intelligence intact and that at times prevents you being awake enough to cultivate it.
Narcolepsy seems to me to be a deeply personal experience. It is often diagnosed just when we find out who we want to be, what our life’s goals are or later when we have set out on a course in life that is very difficult, if not impossible, from which to deviate. I can humbly suggest a few things…
1. Ask your physician does he/she treat other physicians with narcolepsy. Mine has had a few. Ask what specialities they are in, how well they are doing, do they need accommodations, what if any challenges he/she has found they mention and how they have overcome them. From my experience, most of them are in specialities where they can tightly control their schedules and not are doing shift work or overnight work.
2. Be kind to yourself. You will need to be able to remember that you are not like everyone else and it is okay. I remember the thrill of staying awake enough to do clinical rotations and the classwork and thinking that the ability to perform at that level meant that I knew I what residency would feel like. However, the grind of trying to survive 30-hour shifts in the ICU while you are the one truly responsible for the patient, not just the rotating medical student, is very different than medical school. By the grace of God, I made it through four years of residency and fellowship performing well clinically without accommodations being made but it took extra provigil, caffeine to the point of tremors by AM rounds and missing out on everything other social aspect of my life to do it. I would cry in the shower as I went to the hospital knowing I was on my fourth overnight shift in a row and feeling such a sense of dread. I was running on empty and wishing I was not me but something “better” or someone else. So when you feel you wish you were like other people and perhaps wish you were different, be kind to yourself and ask how many people can actually do what you are doing, even in good health.
3. Consider telling your residency director about your diagnosis. During the application process and the match, I think you are safe in keeping your diagnosis to yourself if narcolepsy has not prevented you from fully functioning, unencumbered by the limitations of the disease as a medical student. If you are in any doubt, consult an attorney who will let you know what you need and don’t need to disclose depending on what the program is asking regarding your health history. This is not so you can look for a legal fight. It is to make sure you are maintaining your honesty and integrity while protecting your health information. However, the week before I began my training, I told my residency program director about my diagnosis and during the rest of my training, I casually let folks know about the diagnosis. Soon folks knew I wasn’t rude when I fell asleep in dark lecture rooms during powerpoint presentations…I simply had a sleep disorder. If I fell down, I didn’t need a rapid response called, it was just cataplexy (mercifully has only happened once at work).
4. Having children can be a challenging proposition for any resident/attending let alone one with narcolepsy. If you are a female and plan on having children, ask yourself do you plan on having them in residency and if so, do you plan on stopping your medications during any point. There are very limited studies regarding many of these drugs especially the newer agents of Nuvigil and Provigil. Xyrem seems to have a better side effect profile in animal studies but many physicians simply recommend stopping them during the time you are trying to conceive and at times, the entire pregnancy. Do the pubmed literature search and you unfortunately will discover there is limited information regarding studies related to this topic. I did not find out about this until too late and unfortunately, will likely never have children as I am not in any financial position to simply not work for nine months and my spouse is understandably worried about the consequences to the fetus with such medications. You can certainly elect to continue to take them but without knowing their full risks, mothers are often reticent to do this, so please consider this when you are planning your residency and career.
4. If your family is supportive, consider, if feasible, doing your training closer to them. When you are completely drained and sleepy from having done an endless night in a SICU or MICU or if you been up all night reading trauma CTs during your overnight radiology shift, it is kind to have a meal a loved one brought over, or someone to spent time with who is simply happy to spent time with you even if it means you are taking naps through half the day.
5. Continue for other doctors and health care providers to know precious little about your disorder. Physicians are relatively in the dark about the disease. Often you may be told it is “wonderful” to be able to sleep like you do, often not knowing that poor sleep quality and disrupted sleep are also hallmarks of the disorder. It is annoying in medical school, frustrating in residency and by the time you are an attending, baffling that few in healthcare seem to know what narcolepsy entails.
The bottom line is it is wonderful to hear the spirit, courage and tenacity come through in your writing. It brings a smile to my face and takes me back to the moments where I was determined to tell the world I was going to show what a person with narcolepsy could achieve. I am a Christian so I credit what I accomplished through the strength and grace Jesus gave me and a supportive loving dad who encouraged me throughout . However, regardless of faith persuasion, it is amazing and thrilling to see the results of what grit, dedication, love of patients and career calling can bring. I applaud your progress so far, wish you nothing but the best and pray that as you plan your path, your achieve the career goals for which you are striving.
Hi MD with Narcolepsy,
Wow… I know this is 2 years late, but your post literally brought me to tears. I was diagnosed with narcolepsy halfway though my third year of medical school. I am now a fourth year and will be taking step 2 this coming week. While I should have made my decision about what specialty to go into months ago, lately I have found myself reconsidering applying to urology (despite a very low step 1 score). I am passionate about urology, but am concerned about my ability to survive let alone thrive in a residency that is so demanding. Do you have any advice, recommendations, or insight about the idea of becoming a surgeon with narcolepsy?
“Memories of how I sought to reconcile a mind capable of learning medicine but not awake enough to practice it at times”…wow that really struck a chord with me. I couldn’t have said it any better myself. As a physician trainee with narcolepsy, I just want to say thank you for sharing your personal experience and insights with us.
Thanks for sharing, It is nice to know that there are others out there. Angie
I am a medical student, 5 weeks away from my finals and waiting to hear back following an MSLT about a possible diagnosis of narcolepsy. Reading this was pretty shocking because this could easily be someone writing about my life and the struggles I’ve been though to get to this point. It’s great to be reminded that there are other people out there who have gone through the same thing and succeeded.
Hi! I am currently a second year med student, and honestly I’ve been having trouble with sleep even before I entered med school. It started around when I was 15. Despite the similarities of what i experience with text-book symptoms (I have excessive daytime sleepiness, sometimes I have hallucinations before gradually dozing off, and I often have sleep attacks), I haven’t been diagnosed yet, since convincing my parents that I had to get a check-up was hard, and they it looms like they don’t really believe me whenever I try to share my everyday experiences (and struggles) that I have with sleep, which kind off saddens me in a way. It had truly been a struggle for me, but I am glad that I had surpassed the first year of medical school. I know I was not able to give my best, since there were a lot of opportunities and wasted study time hindered by my excessive need to sleep. I even came to a point that I had several breakdowns during a month-long span of exams, since my efforts in staying awake to study hadn’t really been enough.
As I enter the second year of medical school, honestly, I’m scared. Questions like- “Will I be able to pull through the next school year, given the hefty academic load and amount of readings we have for the second year?” have already started running through my mind.
🙁 HEEELLLLPPPPPPPP.
Thank you for sharing this! I was at the end of my second year of medical school when I found out I had narcolepsy; later that year I found myself arguing with our school’s ADA (Americans with Disabilities) representative about whether or not should be ALLOWED to continue in medical school. I think my saving grace was that I don’t have cataplexy, or at least not typical cataplexy. I am now about to be a second year internal medicine resident but I applied for physical medicine and rehab. I disclosed my condition in interviews as I struggle I had been able to overcome and hoped I would be respected for it. I think it’s the reason I didn’t match. Thankfully in my current program everyone is very supportive of me and understands that sometimes I need help staying awake in lectures or waking up for an early shift. I am grateful for them and hope that my being open about it will someday save some of their patients from the extensive lag time many of us have endured before being diagnosed. Even so, today we had a lecture on “Sleep deprivation and fatigue”; they talked about the circadian rhythm and how accident prone you can be when your sleepy. Then, they offered suggestions for fixing the problem and all I could think was “yeah, maybe if you’re normal, but not for me”. It got me wondering just how many residents out there also have narcolepsy so I searched. It’s very refreshing to know that I’m not the only one. Thank you for this post and know that you are an inspiration to the rest of us.
May I ask which hospital you’re at? It’s heartening to hear of a supportive program. I’d been at 2 (one for internship, another for a full 3 year one) before I was terminated. Please e-mail for privacy but I’d appreciate the info. mistherd17@yahoo.com
My experience so far has been VERY similar to yours. Would love to connect with you!
i want to go to medical school. and i’m pretty sure i have narcolepsy all the things you explained i do. i find myself crying because i don’t want to get diagnosed and ruined my chances. i’m going to the doctor tomorrow. thank you for sharing this
Hi, I have narcolepsy and I’m just going to be starting college next fall. I had to repeat 2 years of high school before finally being diagnosed, so I’m finally getting to go to college at the age of 21. I want to go into psychiatry/neurology, but I’m terrified of the reality of managing my condition while going to med school. The medication I take is a miracle for me, but it requires a very strict routine. How did you manage late nights and clinical rotations? I have to go to bed at the same time every night for it to be effective so I can’t be up at all hours. Any advice would help!
Hi i live in the UK .I have not been diagnosed with narcolepsy but I have the classic symptom I am currently at university studying midwifery I’m afraid to get the ball rolling by going to my GP and at them same time it really starting to affect my learning and Work placement. I’m also afraid that I will get kicked of my course.
I am so encouraged to hear from all the physicians and medical students with narcolepsy! I have had narcolepsy since about the age of 10, and I have been diagnosed and on medication since my sophomore of college. My parents are trying to discourage me from working in medicine at all, because of the rigors of medical school and residency. However, I have been thoroughly preparing myself for this since college and I don’t feel like PA or any other position suits my interests and goals professionally. I’d have to back to college if I wanted a career change. How have you communicated your determination to your family members to stay in medicine?
Hi Grace, I just started medical school and am definitely very nervous about going through it with narcolepsy. My mom turned to me last week and asked “How are you going to make it through medschool with narcolepsy?” which caused me to feel a lot of negative emotions. Her concern is not totally uncalled for. Some days my medications don’t “kick in” and I can’t focus, have coherent speech, or put a smile on my face while other days I feel like I am insanely attentive, happy, and love life. I am sure that there are other people in my class who also have disorders or diseases that will add an extra burden to the already difficult journey that is medical school. Knowing that there are other doctors out there who have made it with narcolepsy gives me hope that I can too.
Personally, I won’t let myself not try to pursue my dreams because of narcolepsy. I know that I have the ability to be a great doctor and I also know that this path is going to be extra difficult some days because of this disorder. Honestly, I magically got through most of college before being diagnosed and getting meds (somehow managed to pull off an okay enough GPA to get into medschool although I slept through literally all of my classes) so I have to believe that I can get through medical school and residency. I know personally there are certain things that I can do to help increase the effectiveness of my medications (i.e. get 8 hours of sleep, go to sleep and wake up at the same time every night) and when I am feeling too sleepy to function I know a few things that sometimes help (i.e. workout, take a quick nap, listen to music that makes me dance, call a friend, or watch a funny video). Many lectures in medical school are pre-recorded so you may not even have to go to class and can watch the videos on the time that fits for you! I’ve also been told from most people that they only study 5-6 hours a day (not including classes) so it isn’t like you need to be up 24/7 studying.
I also worked in an emergency department and was very nervous about narcolepsy impeding my abilities. I told every single physician that I worked with about it and said that there may be times I ask them to repeat themselves or need to take a quick break to eat in order to take my medications and 99% of them totally did not care. I was even shocked at how frequently I was able to stay wake because I was passionate about what I was doing, excited by the ER when it was busy, and when it was slow I hung out with the nurses and techs who always helped to wake me up. Also probably not the best idea for many reasons, but I was in charge of writing 100% of a patient’s chart and there were times where I felt like I was asleep for 10+ charts so I would go back and check the notes when I became more awake and I had actually typed everything in accurately and completed everything – I guess autopilot really is a thing. I even tried an overnight at the hospital and while I was SO tired from the 11 PM – 1 AM portion of the shift, I was straight up more awake than the doctor from 1 AM – 7 AM because narcolepsy causes me to feel awake at random times in the middle of the night. I also have minor cataplexy and sometimes needed to sit down (because I physically could not stand) when I should have been standing and honestly no doctor ever said anything to me about it.
If this is something you have your heart set on, YOU CAN DO IT!!! Tell your family that you believe in yourself (even if there are days that you may not) and you know that you can accomplish anything you put your mind to. If you want, you can tell them that you may need their help and support throughout the process, but this is something that you are doing. Medical schools can help accommodate your needs and I am sure residency programs can help too. I divulged in my applications that I have narcolepsy and during the interview at the school that I am currently attending, one interviewer was incredibly rude and questioned me about my medications and how I can function as a person etc. etc. while the other interviewer told me that he was VERY impressed that I had gotten this far (which no one has EVER said to me and made me be like “heck yeah, wow, I am amazing!), he believed in my ability to thrive, and was only concerned that maybe overnights will be difficult but that everyone finds overnights difficult so I will be fine. I haven’t asked for any accommodations or reached out to any professors yet because we are utilizing Zoom due to COVID and I don’t think they will notice me falling asleep. But once we are back in person, I 100% will tell every professor and tell anyone that I work with in a group. Yes, narcolepsy is a big part of who I am, but I will try not to let it determine my life for me. I probably shouldn’t go into surgery because I don’t think standing in the same position for more than an hour would have any good outcomes for a patient or myself and I definitely won’t go into radiology because sitting in a dark room by myself for an entire shift sounds is setting myself up for an 8 hour nap, HOWEVER, there are so many fields that I want to go into that I hopefully will succeed in and I know you will too! Just finishing the premed college classes with narcolepsy is freaking amazing and you should be SOO proud of yourself.
Sorry for the crazy long message!
TLDR: Tell your family that this is your passion and you know that you can do it (even if some days it feels like you can’t) and you will succeed. Ask them for support if you want or rely on other forms of support (friends, professors, narcolepsy groups, etc.) Find routines that help you stay awake and happy. You’ve already gotten this far with narcolepsy so in my mind you are a true super hero! Go pursue your dreams of being a doctor, you’re going to be great!!
I work with medical students and have found it challenging to advocate successfully for students with narcolepsy to receive accommodations on rotations. There seems to be an attitude that avoiding rotating shifts changes the curriculum. Have any of you successfully advocated for yourselves or others regarding such accommodations? If so, I’d love to hear any insights you may have.
My son was dx in med school. No cataplexy. Medicine is/ was always his passion. He wants to be an ER doctor.
He’s now halfway through his ER residency. Struggling but determined. Has been put on remediation etc. Had to take a time out and also disclose his dx. at some point. Perhaps they wondered he was on something and that’s why wanted him checked out who knows. Now he’s worried if it’ll be held against it?
Could never build those life habits that help one to be organized. Now it’s coming back to haunt him. Family provides him full support. We get sad and worry if he will make it through. Cannot see him fail and not make it to his dream, after all that he’s been through to get to this point. Most people don’t understand what Narcolepsy is; even the doctors he works with. I just hope his dx is not held against him and that he’s not judged by people who don’t even understand it. But I’m afraid it is now held against him.
I’d love to hear of anyone who has made it thru Emergency Medicine Residency with Narcolepsy and is doing well and thriving.
Good luck to all of you troopers and may you all fulfill your dreams!
I am sure your son has done well. I am a board certified Emergency Medicine Physician. I had sleep apnea but was told I could not have sleep apnea because I was not overweight during medical school. My diagnoses was delayed for 20 years. I was subsequently diagnosed with Narcolepsy at age 63 after being missed diagnosis with ADD. Xywav controls my sleep which has helped my concentration and memory. He would probably benefit by using a scribe and paying someone to keep him organized. It’s a difficult life but one we learn to live with.
Hi, I am currently a 3rd year ER resident with only about 6 months left of residency. I’ve been searching through a lot of forums for physicians w/narcolepsy, specifically those in emergency medicine & saw your post. If you have any tips or advice, I’d much appreciate it. Residency has been a struggle but luckily my program is great & tries to accommodate. However, I’m feeling burnt out and considering taking some time off, but would love to hear from someone who went through the same thing.
Thanks
Hello,
I would like to remain nameless but I am a current medical student and have been “abusing” Adderall in an effort to keep up in med school, my sister has been splitting her dose with me for about two months now. When I say abusing I don’t mean it in the traditional sense college students do. In fact don’t WANT to take it and I’m not addicted but the alternative is to sleep at inconvenient times like exams, lecture, driving. I have been scared to seek help because I know the treatment is usually some sort of stimulant, and I’m aware of how that “looks”. I did recently started seeing an internist who has been helping me but I told her I was an architect because of my fear of stigma. I feel so unethical and shameful taking a med not prescribed to me but right now the non-medicated options are still having me sleep. I have a f/u on the 24 of May 2021 and that’s still 10 days away. We discussed provigil at my last visit but she wanted to see my BW before adding on new meds (im also on depression meds which i’ve been on for years so i doubt it’s related)
I’m just tired of being tired. 🙁
It’s good to knkw I’m not alone in this. I was diagnosed 2 years ago, but I started with symptoms 5-6 years ago, starting in med school. I shared my diagnosis with the counsellor of the med school and I’m not sure if it was the best decision. They always say that the students can ask for help in case we are having some health issues, but almost nothing of support I’ve received from them. I’m living with the stigma of a bad students before professors and others. It has been hard for me to study and retain information, and even harder to keep the pace with a med student schedule. I’ve been thinking of dropping and look for another career. Knowing that are med students that struggle with narcolepsy and are able to keep forward despite everything makes me want to stand up, keep my head high and continue no matter what professors say about me, that I’m not able to study this career. Thanks for sharing. You have given me hope.
I’ve had syptoms of narcolepsy since I was 7 tried going to a hospital but they found nothing but now without any diagnosis or medication it’s hard hard cause in my country medicine and a neurologists are both almost impossible.Any advice on how to access the right medicine without prescription.
I don’t believe I have ever left a comment on an online article before, but I could not leave this page without sharing my thoughts. I am a first year medical student. I cried reading all of these comments (when I surely should be studying). I want to say thank you to everyone who shared their stories. I was diagnosed with Narcolepsy about 6 months ago. This comment section has given me hope. I also have told everyone and their mother I have narcolepsy before thinking about the potential consequences with regard to residency match. My diagnosis did take away my chances of becoming a physician in the military. Medical school is hard, and so is coping with a diagnosis of a chronic illness. If anybody in the medical community would like to continue this conversation please reply to my comment. I think I would like to remain anonymous for now.
Not an MD student but started PA school back in May. I just found this thread and it is something I have been searching for. I have so many questions for providers who are out there and thriving, I just want to know?! How did you survive and did you remember it?!
I struggled for awhile on telling people within the program. I decided to just let it fly and be me. I lost a job in the medical field due to my narcolepsy just two years ago. Now as a PA student I fear rotations and how things might look for me if my preceptors know. But Narcolepsy is something I can’t change! As a mom to 2 little boys and a PA student, I feel I shouldn’t have to be questioned on where I can do something or not. I’m climbing a mountain just like everyone else, my mountain just has a few more clouds.
Hi, I am a psychiatry resident from Poland, NT1 si ce 3rd years of medications studies. Would be great to make a kind of group for doctors or MDs with Narcolepsy! We can share our experienxes and support in our practise 🙂 if you would like to contact you may find my on Facebook or email
Agreed. Kindly email me the group email once u have made it to qassimbravo@gmail.com
I too have never left a comment after reading an article until now…but just had to. I started having obvious symptoms while in graduate school but was misdiagnosed a few times until I was properly diagnosed during medical school. I ended up taking some time off in between my studies to better manage my symptoms before residency. I’ll be starting residency this July but would be more than happy to connect and continue this discussion with others.
I remember diagnosing my self as a second year pharmacy student and asking for a sleep study only to find out I was right and wished I was wrong . I even asked for a genetic test to try to give me some hope and hope
Lost.
Hi, I am a family physician with narcolepsy diagnosed in 2018 but symptoms began when I was 15. I was also recently dx with ankylosing spondylitis. I am taking Xywav, Nuvigil and was recently prescribed Sunosi. I am having difficulty keeping up with my charting. I have about 400 charts open and I struggle to stay awake to close them. I’ve had the vice CEO of the organization I work for have a meeting with me to tell me to see more patients and get my charts closed within the next 2 days. I’m struggling and the perception the organization has of me is that I am lazy. I see on average 17 patients a day and take brief naps in between seeing patients. My MSLT showed an average sleep latency of 28 seconds and REM latency was 3 minutes. Any advice you have would be greatly appreciated as I am starting to feel hopeless 😞
Hi Aleena. I’m really sorry to hear about your narcolepsy struggles and their negative impact on your ability to work. I’ll be starting my FM residency this July and share similar concerns. So I’d appreciate any advice from others in the group. Please don’t lose hope and hang in there!
I’ve read and reread this article many times since it was written, and come back from time to time when my symptoms feel overwhelming and I need reminding I’m not the only doctor out there with this thing to deal with.
I was diagnosed as a junior doctor after a kind respiratory resident saw me napping on the ward and started asking questions. I’m still not sure how I managed an undergraduate degree and studying medicine. I knew not to attend lectures, I’d be asleep in 5 minutes, so made my way through with all sorts of odd coping mechanisms.
I’m a surgeon now. Partly because I ruled out any specialty where I would sit down too much after falling asleep during placements in clinics!
Most of the time, with medications, I’m fine and people don’t know. But it’s hard, and sometimes I cry thinking about all the hours and adventures of my youth I’ve missed asleep or too tired to join in. Sometimes I wonder how much more I could have achieved if I wasn’t so sleepy. I’m grateful I don’t have cataplexy, probably hard to operate if that happened.
But for anyone else reading this. All you can do is the best with what you’ve been given, hang in there.
Hi Em,
I’m a resident surgeon at the moment nearing the end of my training. I’ve been dx around 10 years and thankfully was able to cope relatively well during medical school and prior years of residency. As a current surgeon, did you ever have issues with finding or obtaining disability or medical practice insurance? I’m nearing the point of looking into these items and can’t find much out there and am considering consulting a healthcare legal expert. Would love to get your opinion. Thank you.
Oh how I wish that I came across this article during medical school! My story is nearly identical to yours. At the time, I felt so alone dealing with it. I think it would’ve helped emotionally to know that I wasn’t the only one going through this. Thank you so much for sharing your experience. I’d love to get in touch with you. We would surely have a lot to talk about. Sending you my best 🙂