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A Note on the tone
A Note on the tone
A couple of months ago, my sister reached out to me. Her friend had just been officially diagnosed with Narcolepsy, and was struggling with the diagnosis. She asked me to reach out to her to offer support and I agreed. Below is a modified version of the letter that I sent to her. There were no photos in the email, but I think that it is important to note that the tone of this is meant to be encouraging to someone struggling with the diagnosis of a chronic condition that is considered by most a disability. There are those in the disability community that are against this type of widespread "inspiration porn" which serves to further distance those who identify as disabled with able bodied people. The following is, however, how I personally view my diagnosis. For me, positive self-talk and personal narration is important to allow me to be compassionate not only with myself, but towards others as well--especially in difficult situations or conversations.
I have added information along the way that was not in the original letter to my sister's friend. I'm sure the headings and sections and table of contents are obvious additions, however, they are not the only additions. She did not need me to explain what N/NT1/NT2 or Nw/C and Nw/oC mean. She wouldn't need an explanation of the Epworth Sleepiness Scale or what an MLST is like. Those have been added for the benefit of anyone reading this. I have also linked sources to more information along the way and included a list of references at the end.
Everyone is different...
Everyone is different...
but for me, my diagnosis was more empowering than disempowering. Let me explain:
For years and years, I struggled with always feeling tired. It was an exception for me to feel rested after sleep and I just thought I "wasn't a morning person". I was unhappy with my life a lot of the time for various reasons. Other people around me complained about being tired all the time too and I just figured it was a part of being an adult: constant fatigue and sleepiness. I also had some pretty severe allergies for several years to which I attributed my loss of energy. At work on a particularly bad day, I would daydream of curling up in a quiet un-traveled corner and just taking a nap. There was a particular stretch of time when I was dedicated to packing my lunch for work--not to save money, but to save time so I could nap at lunch. It hadn't occurred to me that the other people complaining about being tired were making poor sleep decisions and getting less than 8 hours, whereas I would get 9 or more and still feel dead to the world.
My journey to a diagnosis was relatively simple though. Unlike many others who think they have Narcolepsy (Often referred to as N, NT1 or NT2), once I was on the track to diagnosis it was a straight shot from my sleep specialist appointment to scheduling my polysomnography and MLST. The only bump was that my initial insurance approval didn't include the MSLT and I had to wait another week and a half for that to be approved. lol...As I said it was pretty easy for me.
During the pandemic, the loss of my routine schedule and the financial issues (as a result of losing income from the 2 jobs I had before shutdown), and the fear that ensued after finding a lump in my breast (and having to get ultrasounds, mammograms, and biopsies in the middle of a pandemic) that left me incredibly depressed and anxious and I attributed my desire to never leave my bed to that situational depression. Then there came a point where the troubles I had been experiencing had finally been resolved, I knew that --what turned out to be several masses-- were benign, and I was actually super happy with my life--but I still couldn't get out of bed...and that's the point when I decided that something was actually wrong.
Fat Bias in Medicine
Fat Bias in Medicine
"N" = Narcolepsy
I am overweight, even on the verge of "severely obese" if you pay attention to BMIs (though I don't because those are actually a poor, racist measure of health1), so I figured that I probably just had sleep apnea and that was why I was so tired. I asked my PCP for a referral to a sleep specialist for a sleep test. She happily agreed. Like I said... I am overweight... however despite this, I do not look "severely obese". Especially my face. I promise that this is important to the story and not just me being conceited...
A big theme in the N community is that their doctors refuse to believe a couple of things (even though they're supposed to be the experts and the data disagrees with the following statements2,3): 1. If you're fat, it's probably just sleep apnea 2. you cannot have both sleep apnea and narcolepsy. This is important because I never saw my sleep specialist in person. My first appointment with him was via zoom. So, because "I carry my weight well" and because my face itself doesn't look "fat" I avoided fat bias in my diagnosis. It is also possible that this provider was just more aware of narcolepsy and not "afraid" to diagnose it, but based on a lot of first-hand stories I would venture that it is entirely possible that zoom saved me from a struggle with diagnosis.
Path to Diagnosis
Path to Diagnosis
Here's a little activity for you to follow along with me. I had to fill this questionnaire out before my first visit with the sleep specialist. Fill it out and see how sleepy you are.
Epworth Sleepiness Scale
Epworth Sleepiness Scale
Instructions: In your current, usual way of life, how likely are you to nod off or fall asleep in the following situations, in contrast to feeling just tired? Even if you haven’t done some of these things recently, try to work out how they would affect you. It is important that you answer each question as best you can.
Using the following scale, choose the most appropriate number for each situation.
0=would never doze
1=slight chance of dozing
2=moderate chance of dozing
3=high chance of dozing
Sitting and Reading
Watching TV
Sitting, inactive in a public place
As a passenger in a car for an hour without a break
Lying down to rest in the afternoon when circumstances permit
Sitting and talking to someone
Sitting quietly after lunch without alcohol
Driving, while stopped at a red light, or stopped in traffic for a few minutes
Add up the numbers you selected for the eight situations to get your total score. A score of 10 or greater raises concern: you may need to get more sleep, improve your sleep practices, or seek medical attention to determine why you are sleepy.
My initial score was a 19. (and I had forgotten about that time I fell asleep in the middle of class)
First Visit
First Visit
Anyway, it was at the first visit I did the Epworth sleep scale and we discussed my sleep habits and how I felt, etc. It was during this appointment that the Dr actually told me that he thought I did not have sleep apnea, but narcolepsy. Seriously--first visit.
Narcolepsy, unlike other rare disorders, has a strict definition and specific metrics that allow for a diagnosis. It is not simply a diagnosis of exclusion like other diseases that are even more common (like Alzheimers).
Given that unlike many others, I did not have to try to convince my doctor that something was wrong, my next step was clear: I needed to have sleep tests done.
This is all well and good, but what is Narcolepsy (N)?
This is all well and good, but what is Narcolepsy (N)?
Narcolepsy sounds a lot like Epilepsy to people and they often get confused. In fact, some of the symptoms of Narcolepsy can be misdiagnosed as epilepsy indicating that the rarity and the misunderstanding of Narcolepsy persist even with trained physicians.4 In popular culture, Narcolepsy is often a punchline. I've only ever seen it portrayed in comedies like Rat Race, Deuce Bigalow Male Gigolo, and as an inaccurate plot device in The Mysterious Benedict Society.
Narcolepsy is a sleep disorder which is characterized by Excessive Daytime Sleepiness or "EDS". This is continued and severe fatigue that is present for over 3 months not caused by poor sleep habits or limited sleep. There are 2 types of Narcolepsy: Narcolepsy Type 1 (NT1) and Narcolepsy Type 2 (NT2). Narcolepsy is rare, so symptoms are often attributed to other conditions often leading to misdiagnosis and delayed treatment. A vast number of N patients report having been misdiagnosed with another condition before being diagnosed with Narcolepsy. This is due, in part, to its rarity. It is estimated that only 0.1% of the population is affected by Narcolepsy (both NT1 and NT2 combined).4 However, there is also a lot of misinformation out there and most physicians could not tell you the diagnostic criteria for Narcolepsy. In fact, while fact-checking to find out the time requirements for the test results, I found that Stanford Medicine's website about the MSLT test gave erroneous information.5
To be diagnosed with Narcolepsy, the following requirements must be met.
Narcolepsy Type 1 (NT1):
Excessive Daytime sleepiness
Sleep test results showing an average sleep latency of less than 8 minutes
Sleep test results showing early onset REM periods.
low levels of the protein hypocretin in Cerebral Spinal Fluid or clear episodes of cataplexy (either patient-reported or on sleep test)
Narcolepsy Type 2 (NT2):
Excessive Daytime sleepiness
Sleep test results showing an average sleep latency of less than 8 minutes
Sleep test results showing early onset REM periods.
"It is possible for a person’s diagnosis to change over time. Around 10% of people who are initially diagnosed with NT2 will develop cataplexy at a later date, at which point their diagnosis is reclassified as NT1."4There are multiple theories as to why this is the case as much is still unknown about the biology of Narcolepsy.
The Sleep Test For Narcolepsy is Torture - Literally.
The Sleep Test For Narcolepsy is Torture - Literally.
It is very important as the only other test for N can only diagnose NT1, and it is an invasive procedure (lumbar puncture) that carries greater risks. That doesn't mean the testing is pleasant though, and the sleep deprivation I describe later can be described as torture.
An absolutely ridiculous selfie of me with all the sensors glued and taped to my face during my Narcolepsy testing. The sensors on the top of my face and head measure brainwaves, the sensor taped across my cheeks and under my nose tests for snoring, the chin sensors detect teeth grinding or talking and the sensor on my chest (along with others that cannot be seen in this photo) recorded my heart's electrical activity (electrocardiogram).
Unseen sensors are also attached to my arms and legs to detect movement while I sleep. The video of your sleep is taken also to detect movement and talking.
Many people have sleep tests call a polysomnogram (PSG). These are used to diagnose sleep apnea and other disorders. That is just them putting electrodes all over you and watching you on a camera all night. Slightly creepy, but not torturous.
Those diagnostic criteria I outlined above for sleep test results? Those are specific to the second test done for people undergoing Narcolepsy diagnosis. The test is called an MSLT (Multiple Sleep Latency Test).
So, they attach a small mountain of sensors all over you and then you tuck in for a poor night's sleep (all people with Narcolepsy have poor sleep --it's the reason for our symptoms). Then, at the crack of dawn (or earlier) they wake you up. This is where someone undergoing a simple PSG would pack up and head home. Those being tested for Narcolepsy are not as lucky. This is where we are tortured for 8-10 hours.
After waking up, we have to stay awake for 2 hours (no caffeine allowed!). After 2 hours are up, they plug all the sensors back in to the recorder and you are instructed to try to fall asleep. That part was absolutely great honestly because by this point I was struggling to stay awake.
How you fall asleep during these naps are the basis of the diagnosis. First, they are looking to see how long it takes you to fall asleep. People with narcolepsy will fall asleep quickly (less than 8 minutes is the diagnostic threshold). Secondly, they are looking to see what your brain activity is like when you fall asleep.
The above image shows what sleep should normally look like. Falling asleep at 10 pm, the average, non-Narcolepsy, person would be expected to progress through sleep stages and go into REM about an hour later. This then begins an approximately 90-minute cycle through the sleep stages.
People with Narcolepsy fall into and rocket out of REM too quickly. On the nap tests, they are looking to see if you go into REM 4 or more times in less than 15 minutes.
Tests confirmed NT2 (though honestly I suspect looking back on events since that I think it may be NT1, but considering there is no treatment difference, I am not worried about the difference). Between my first visit and the visit after the tests where he confirmed the diagnosis, the suggestion of an N diagnosis alone made my self-compassion increase. I didn't need to feel guilty about napping...in fact, it is a legitimate coping mechanism for narcolepsy...not a sign that I am "lazy". The extra weight always made me feel like taking naps was further proof of my laziness and that I was just a weak person with no self-control (I had/have some binge-eating issues). However, since diagnosis, If I feel the need for a nap for any reason (and especially if I forgot a dose of meds), I do not "beat myself up" for it. I know that a 20-minute nap will actually improve my productivity and that I have nothing to be ashamed of. The studies between excess weight and narcolepsy allowed me to forgive myself for gaining 25 pounds over the course of a couple of months in my junior year of high school --something I had previously attributed to my own mistakes, though now I realize that was most likely the onset of my Narcolepsy. It also helped me understand why losing weight was so much harder for me. I also discovered that many of my binge-eating episodes were related to feeling tired. I have been able to drastically reduce my number of binge eating episodes by going to bed or napping. A decade of feeling tired and food (especially things high in sugar or high fructose corn syrup) giving me temporary energy boosts reinforced the fatigue=hungry connection.
It explained episodes of falling asleep reading things for class, or falling asleep in physics lecture even though (as I later told me friend who I was falling asleep on) I wasn't even "as tired as usual". It was a journey for sure to find the medication that helped me best, though for now I do think I have found it. It has its drawbacks, (such as reducing the effectiveness of birth control, and causing birth defects if taken during pregnancy), for now, it is the right medication for me. There are days when I am convinced that my narcolepsy wasn't all that bad and that I'm just remembering things wrong...and then I forget to take my meds one day because my schedule was different for some reason, and I feel the full weight of my unmedicated narcolepsy and I realize that 1: I'm not faking it 2: My medication really is helping me 3: I'm a fucking superwoman. Now, my fatigue is typically related to my crazy schedule of being a full-time student with 2 part-time jobs and an 11-year-old son. My fatigue is more about the natural consequence of having a busy day running around doing things, not because of Narcolepsy. With my medication, I don't have half of my brain power consumed with thinking about how tired I am and how every flat surface looks like a good place to nap (a photo series I have actually started).
TL;DR: My narcolepsy diagnosis helped me be compassionate towards myself and realize that many of the things I had been attributing to my "poor character" as a person were just side-effects of my N.
Let me show you my receipts
Let me show you my receipts
Although this does not constitute a comprehensive list of all of the research out there (or that I have personally read), it does serve as a starting point for any person interested in learning more, and helps to explain the reasons behind some of my statements later in the letter and provides the foundations of knowledge regarding Narcolepsy that many people are unaware of.
Here are a list of primary and meta analyses studies that support my above statements.
Here are a list of primary and meta analyses studies that support my above statements.
Geoff B. Dougherty, Sherita H. Golden, Alden L. Gross, Elizabeth Colantuoni, Lorraine T. Dean, Measuring Structural Racism and Its Association With BMI, American Journal of Preventive Medicine, Volume 59, Issue 4, 2020,Pages 530-537, ISSN 0749-3797, https://doi.org/10.1016/j.amepre.2020.05.019.
Gemma Sansa, Alex Iranzo, Joan Santamaria, Obstructive sleep apnea in narcolepsy, Sleep Medicine,Volume 11, Issue 1,2010,Pages 93-95,ISSN 1389-9457 https://doi.org/10.1016/j.sleep.2009.02.009
Mayo Clinic's Overview on Narcolepsy: https://www.mayoclinic.org/diseases-conditions/narcolepsy/symptoms-causes/syc-20375497#:~:text=People%20with%20narcolepsy%20may%20have,or%20staying%20asleep%2C%20called%20insomnia.
Sleep Foundation. “How Is Narcolepsy Diagnosed?,” February 18, 2021. https://www.sleepfoundation.org/narcolepsy/diagnosis.
**WARNING: I AM CITING THE PAGE, BUT THE INFORMATION ON THE REFERENCED PAGE IS INACCURATE** “Multiple Sleep Latency Test (MSLT) | Stanford Health Care.” Accessed April 4, 2023. https://stanfordhealthcare.org/medical-conditions/sleep/narcolepsy/diagnosis/multiple-sleep-latency-test.html.
Sleep Foundation. “Stages of Sleep” February 18, 2021. https://www.sleepfoundation.org/stages-of-sleep
If you have any questions, or issues accessing any of the information provided above, please reach out.
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