I’m Not Looking to be Saved

I'm not looking to be saved narcolepsy julie flygare“Can I ask you something personal?” 

I’d just told this older gentleman, a retired dentist and family friend, that I was writing a memoir about narcolepsy. When he wanted to ask me something personal, I nodded yes with enthusiasm – I enjoyed answering questions about my narcolepsy.

“Are you religious?” he asked.

“I consider myself spiritual, but not religious necessarily…” 

“Do you pray?” 

“No…” My brow furrowed, not sure where he was going with this. 

“Yeah, see, that’s the problem. All you need for a good night’s sleep is peace of mind. You need to get in touch with the man upstairs for peace of mind.”

I was stunned and tried to defend myself, but soon realized this man and I would not see eye-to-eye. It was as if we were speaking two different languages, so I nodded politely and excused myself as soon as possible. My blood boiled for about three days afterward. Three years later, the scar is still there in my gut.

When I tell people I have narcolepsy, I often get questions like this: “Have you tried yoga?” and “What about vitamin D?” and “Do you pray?” 

People are well-intentioned and solution-oriented. I get it and can move on, with a grin hiding my clenched teeth. (Okay. It’s a bit frustrating that someone learning of narcolepsy for the first time thinks they know a solution or cure that I don’t know of, even though I’ve lived with narcolepsy for many years. But still, forgivable.)

But what bothers me most about these questions is that by saying I have narcolepsy, many people assume that I have a problem and that I’m looking for a solution

So let me be clear – I, Julie Flygare, am not looking to be saved from narcolepsy. 

Narcolepsy is a part of me, much like my hair color and ethnic background. I am proud to be a person with narcolepsy. Since being diagnosed, I have run the Boston Marathon and published a book. I never imagined accomplishing so much in my lifetime, never-mind in my twenties.  

julie flygare book interview narcolepsy memoir wide awake and dreaming forward motion karen allen tv 1 photo-379 Julie Flygare Narcolepsy Not Alone Campaign Title Community Cover Summer 2012 Julie Flygare Narcolepsy Image JPEG

Sure, narcolepsy presents great challenges. I have cataplexy and sleep attacks daily. I cried hysterically in the CVS parking lot the other day after dealing with an annoying pharmacist. The list of obstacles and discomforts goes on and on. 

But for me, narcolepsy cannot be classified as “good” or “evil”. Sometimes it is a source of frustration, other times a source of incredible passion and drive. Instead of running from my challenges, I now choose to stand still, watching them shift like the tide. 

Before you feel bad for me or offer solutions for my narcolepsy, consider that your fears are not necessarily my fears. Your feelings about illness may not match my feelings about illness.  I am not afraid of narcolepsy, I embrace it – the good, the bad and the ugly. 

I am open to improvements and have tried many life-style changes and alternative treatments. I believe in a strong mind-body connection, especially when it comes to the immune system.  But I also believe the body is complicated and layered beyond modern medicine and alternative therapies. Some things may not be easily “fixable”. 

If someone has a tooth cavity, can they pray it away? If someone has a broken bone, would yoga heal the break? The cause(s) of narcolepsy are invisible to the naked human eye, thus it’s harder to grasp intellectually, but narcolepsy is still real. 

By insisting on easy solutions, my experience feels invalid — narcolepsy is somehow in my control or my fault. This makes me feel ashamed and guilty. If only I exercised more… If only I wasn’t stressed… If only I was healthier…  This shame is worse than any illness. This self-guilt is more toxic than any disease. 

In closing, I believe there is an over-emphasis on finding quick fixes and avoiding discomfort in our culture, as opposed to leaning in and seeing where our challenges take us. We forget that difficulty is a part of life, and no amount of yoga, dietary changes, prayers or medications will make us immortal. 

(PLEASE NOTE: My opinions are entirely my own here and I do not speak on behalf of anyone else with narcolepsy in this post. Thank you!)


  1. Julie Ann on November 24, 2013 at 8:25 pm

    Oh, how I would love to stand and applaud for you right now! Such a beautiful post, Julie. Truly! I have felt the same way, over and over again.

    Sending warm hugs and lots of love. <3

    • julie on November 24, 2013 at 8:34 pm

      Thank you, Julie Ann. It took some time to work up the courage to write this, but I’m so glad I did. Thanks for your support and love. <3 JWN Fly

  2. Jill on November 24, 2013 at 8:38 pm

    You didn’t need to add the disclaimer at the end of the post for me Julie. You can always speak on my behalf! Once again, you have articulated something for me that I haven’t been able to on my own.

    Thank you Julie! And sorry about the pharmacist. Ugh! I had a tearful event after an interaction with my long-term OBGYN at my first visit after my diagnosis. She was not happy about one of the N meds I was on and she was a bit of snit about it!

    Thank you for all you do to raise awareness. It’s because of people like you, that people are getting more aware and things are changing for the better!

    Love, Jill

    • julie on November 24, 2013 at 8:50 pm

      Thank you for reading and commenting, Jill! I’m so glad this rings true for you too. You are an inspiration. Thank you for all your support. <3 Julie

  3. Katie on November 24, 2013 at 10:40 pm

    Great post, Julie! I really enjoyed reading this. My 1st encounter with how hurtful others’ “help” can be was from a pharmacist. She didn’t suggest a quick-fix solution like prayer, but instead suggested I was causing my Narcolepsy by taking prescribed stimulants (despite the medication being specifically FDA approved for Narcolepsy!). I was so taken aback that I was speechless. Maybe I’ll drop off a Narcolepsy Fun Fact package there (with your awesome infographic!) so they can learn about Narcolepsy. I’m tempted to make a “Did you know…” sticker just for pharmacists after the stories I’ve heard. “Did you know Narcolepsy patients don’t enjoy being treated like addicts?” I’ll refrain, as that won’t solve the issue. All those emotions just resurfaced from reading your similar experiences. Thanks for writing this!

    • julie on November 24, 2013 at 10:53 pm

      Oh wow, pharmacists can be hurtful in their suggestions – so true! Thank you so much for reading, commenting and raising such amazing awareness about narcolepsy, Katie. Your friend, Julie

  4. Arianne on November 24, 2013 at 10:44 pm

    How About Trying B12. Lol (Read This after Emerging FromMy Hour Nap)

    • julie on November 24, 2013 at 10:52 pm

      Welcome back from your nap, Ari. 😉

  5. Susan on November 24, 2013 at 10:47 pm

    Oh, the nerve of some people. I’m a Christian minister and I do pray, and if that man had told me that prayer would give me peace of mind and help me sleep, I would have had an angry little mini-sermon for him.

    When I took Reiki classes, the teacher told me that it could cure my narcolepsy. I gave her a funny look and she told me to try it. I self-treat almost daily and I still have narcolepsy. Granted, it has helped with my symptoms and has eliminated my migraines for a long time. But I still struggle every day to wake up, stay awake, and get things accomplished.

    I don’t need fixing. I’m a whole human being the way I am, and yes, struggle is a part of life. Narcolepsy has taught me so many things about life that I would not have learned otherwise. I’m right there with you, sister, leaning in.

    • julie on November 24, 2013 at 10:51 pm

      Thank you for your kind thoughtful comment, Susan. Thank you for understanding that I wasn’t putting down prayer or religion – but yeah, not exactly a solution for narcolepsy in my opinion. My mom is Reiki master and I’ve greatly benefited from her skills – but again, not a cure in my case. Sending wakefulness and big smiles your way, Julie

      • Kate on November 25, 2013 at 4:33 pm

        I know you weren’t putting down religion, just that we would have been able to give the guy an earful (I would have if I wasn’t too stunned to say anything)…although prayer is awesome, God allows some things to not be “fixed” in this broken world we live in, no matter how much we try, or pray, as it were in this case. …because he also wants us to use our brokenness to serve others.

        I am afraid I can come across too much like an “evangelist” for things that have helped my N improve dramatically, I can end up sounding like those you reference. Ugh! Need to be more careful of that!

        I am thankful for this post, and for all your beautiful articulations, Julie. Happy Thanksgiving!

        • julie on November 26, 2013 at 4:03 pm

          Kate – I’m so glad this post was meaningful to you. Thank you for your thoughtful comments. I hope you have a very happy thanksgiving too! Your friend, Julie

    • Ashley on November 26, 2013 at 3:05 pm

      Hi. I’m very interested in Reiki. I have never tried it before but have been getting more frequent migraines. How exactly does Reiki work for migraines?

      • Susan on November 27, 2013 at 5:44 am

        Ashley, I have no idea how it works for migraines, all I know is that it has for me. One morning, about 6 months ago and shortly after taking Reiki training, I started getting a migraine aura. They start out as a small, flashing, zigzag rainbow in the center of my field of vision and over the course of an hour expand to a huge zigzag rainbow wrapping around one side of my field of vision. I started giving myself Reiki on my head, using the standard hand positions. Within 5 minutes the aura was gone.

        Maybe an hour later I started getting another aura. I started doing Reiki again, and it was gone within a few minutes.

        Then in another hour or two, I started getting another aura. I treated myself again on the different hand positions on my head, said “Now this time, stay away!” The aura went away, and I haven’t had an aura or a migraine since.

        I was a total skeptic when I took the Reiki training, but became a believer when the others were practicing on me and I felt hands touching me where we weren’t supposed to touch others. I opened my eyes and saw the hands a few inches above where I was feeling the touch. That was enough to convince me. It is quite powerful, and it is intelligent, divine energy. And it heals what it heals and doesn’t heal what it doesn’t heal. I highly recommend learning it and using it on yourself.

  6. Christina on November 24, 2013 at 11:03 pm

    I have gotten the same comment before.. I once tried asking a particular religious family member about sleep… trying to get a family history from my mother’s side (I couldn’t get it from her directly since she had passed away). Anyway… same thing! “I sleep like a baby because I’m right with the Lord…”

    Anyway, what a great post! I fight like h*ll against my N attacks most of the time, but when I’m able to “make friends” with it, and when I try to let go of the “losing” feeling when I do have attacks, the shame of having this lifelong disease subsides.

    Great post!


    • julie on November 24, 2013 at 11:12 pm

      Christina, I’m so sorry you had such a similar experience too. Safety in numbers, I suppose. You are overcoming adversity daily and I’m cheering for you! Big smiles and many thanks, Julie

      • Dan McDonald on November 24, 2013 at 11:47 pm

        Thank you Julie. I’m not sure I have narcolepsy or not, never had it diagnosed but relate to what you’re saying. I am fairly religious, and in my circles people read a lot. For me when I read it’s immediate journey to dreamland. So I don’t read near as much as people in my circles normally do. But when I think and write it’s like my juices flow and I stay awake and sometimes way too late. So I try to get a little reading in despite the situation, and I do a blog, no big audience but maybe I wouldn’t be doing that if writing didn’t seem to be an end around my falling asleep so easily. You know I’ve heard it said, “Every flower has to bloom where it is planted.” Thanks for blooming where you are.

        • julie on November 24, 2013 at 11:53 pm

          Thank you for this kind comment, Dan. Reading is so challenging for me too. Writing and creative projects make me feel so alive and awake, so I definitely know what you mean!

          I love your flower analogy. It reminds me of a quote from Tina Turner’s ‘What’s Love Got to Do with It’ movie: “The lotus is a flower that blooms in the mud. The thicker and deeper the mud, the more beautiful the lotus blooms.” ~Chinese Proverb

          Sending wakefulness and peaceful thoughts your way, Julie

  7. Melissa Hill on November 25, 2013 at 2:29 am

    Julie, you can speak for me on narcolepsy anytime !

    • julie on November 25, 2013 at 2:53 am

      Aw, thanks Melissa! Thanks for reading and commenting – it means the world to me. Your friend, Julie

      • Melissa Hill on November 25, 2013 at 5:44 pm

        My comment was wayyyy longer! I don’t know what happened?! When I wake up a little more, I will try to remember everything I said and reply again. I’m sure it was incredibly profound

        • julie on November 25, 2013 at 7:40 pm

          Oh no! I’m sorry the rest of your comment was lost. This is very strange and I’m so sorry.

  8. Lindsay on November 25, 2013 at 2:44 am

    I don’t have narcolepsy, but I follow your blog because a good friend of mine does. I do have other diagnosis that elicit the same I KNOW HOW TO CURE YOU response from people and I love this post!!! Maybe put it on a shirt or something? It’s kind of hard to bite my tongue sometimes when people tell me to just does this, or just do that. It really does invalidate the issue, thanks for using that phrase because I hadn’t been able to think of a proper way to describe how it made me feel before now!

    • julie on November 25, 2013 at 2:56 am

      Lindsay, Thank you for reading and commenting. It took me a long time to figure out why these comments bugged me so much… It hit me a few weeks ago and I began composing this post. I’m so glad that this post rang true to you. Thank you for supporting your friend with narcolepsy. And I love your tshirt idea! Big smiles and many thanks, Julie

  9. Saraiah on November 25, 2013 at 3:52 am

    Julie, what an eloquent and powerful post! You speak my mind on so many points in this piece.

    During the four years since I was diagnosed, well-meaning friends and strangers have suggested that I will be cured if I only: pray more often with greater faith, reduce my stress, exercise more, use certain dietary restrictions, stop drinking coffee (!), lose weight, get acupuncture, and more.

    Recently a kind stranger asked if she could pray for me, and when I said yes, she fervently called on the Holy Spirit to “cast out my narcolepsy, or whatever it’s called.” And then told me that if my faith was sufficient, I would be cured. She meant very well, and I simply smiled at her.

    For all these well-meaning folks, I have finally come up with a metaphor. I gently ask them whether they would offer a similar “cure” to a person who had had an arm or leg amputated. Would giving up coffee or praying hard “cast out” that amputation? Would they expect the person they were advising so confidently to grow a new arm or leg?

    There are many possible pathways to developing the symptoms of narcolepsy. One of those pathways is the destruction of the hypocretin neurons in the hypothalamus. Once they are destroyed, they don’t come back again. Just as an amputee has lost a leg, foot, hand, or arm, people with narcolepsy have just as surely lost a tiny part of their bodies. And medical science has not come up with a prosthesis for that part of the brain yet.

    This education and advocacy business takes a lot of restraint at times. I breathe deeply and count to 10 almost as often these days as during the year my daughter turned 14. 😉

    • julie on November 25, 2013 at 7:12 pm

      Thank you, Saraiah! I love your metaphor. This is a great way to explain it. Also, your technique of counting to ten and breathing is fantastic! Your friend, Julie

  10. Alanna on November 25, 2013 at 4:15 am

    “Well, my uncle’s-cousin’s-stepmother’s-hairdresser has a totally-different-but-sort-of-similar-if-you-cross-your-eyes-and-hum-disease and she is practically cured since she started eating nothing but vegetable proteins and watermelon. Have you considered your diet???”

    Ugh. You explain this frustration so well, Julie. Thanks!

    • julie on November 25, 2013 at 7:13 pm

      Lol – so very true, Alanna! I’m glad you can relate. 🙂

  11. Amy on November 25, 2013 at 5:08 am

    Well put-as always! However well intentioned, people’s suggestions can be so infuriating! It’s hard when people try to belittle something that I have to struggle with every day.

    • julie on November 25, 2013 at 7:39 pm

      I agree, Amy! No one deserves to be belittled. Thanks for reading and commenting!

  12. Robin on November 25, 2013 at 4:39 pm

    As always, Julie, you express the thoughts of some many PWN with grace and elloquence! I have always explained narcolepsy/cataplexy as a “sympton” of my destroyed hypothalmus, and of course there are the well meaning suggestions for repairing my brain.

    I’m going to borrow your line, because, like you, “I’m Not Looking To Be Saved” from a part of my life that is a large part of what makes me uniquely Me!

    • julie on November 25, 2013 at 7:38 pm

      Thank you, Robin! Yes, please borrow this line! We deserve to feel proud. <3 Julie

  13. sarah on November 25, 2013 at 10:01 pm

    Your blog has been such a stronghold for me. Two of my daughters (ages 18 and 23) have narcolepsy. I am a surgical nurse, and for years have been treated by most medical professionals like narcolepsy is predominantly laziness, malingering, and (willful) poor sleep habits, rather than the legitimate neurologic disorder that it is. I have felt extremely isolated and stopped discussing it with most everyone including my work colleagues, friends, and even siblings because so many of them seem to be too ignorant to be willing to learn the truth. Reading your book and connecting with your blog has lifted so much of the isolation. Thank you!
    PS And thank you also to the blogger during the “Dear Diagnosis letters” who wrote “Remember to tell your Mother it’s not her fault.” If I could take Narcolepsy from them and give it to me instead, I would tomorrow.

    • julie on November 25, 2013 at 11:10 pm

      Thank you so much for your kind comment, Sarah. Thank you for supporting your daughters with narcolepsy. I’m so sorry you have faced so much ignorance from others. I am glad my efforts can help. We are not alone. With gratitude, Julie

    • Jennifer on November 26, 2013 at 3:40 pm

      Sarah, I am so blessed to be able to touch your heart! My Mom lived so long thinking she did something when she was pregnant with me, it was such a relief to assure her everyday it was not her fault. Jennifer

      • sarah on November 27, 2013 at 2:58 am

        Like your Mother, I have considered and reconsidered every possible way that narcolepsy was somehow my fault. Then, I felt terrible for the years and years it took to figure out this elusive diagnosis. In hindsight, and armed with the knowledge I have now, it is all 20/20, and so clear. Finally, we are on the road to understanding and becoming empowered and perhaps (I dare hope) even transformed in remarkable ways by this uninvited guest into our lives called Narcolepsy.

  14. Alta Hanlon on November 26, 2013 at 1:05 am

    I have always thought that narcolepsy was a neurological condition. When it comes to neurological things, my impression is that there isn’t much to do but take a drug for it. No quick fixes like no quick fixes for CFS.

    • julie on November 26, 2013 at 3:55 pm

      Alta – yes, narcolepsy is neurological with no quick fixes. We are on the same page about that. Thank you for reading and commenting, Julie

  15. Roseanne Blum on November 26, 2013 at 4:55 am

    Wow! I can so relate! Thanks for writing this.

    • julie on November 26, 2013 at 3:56 pm

      I’m so glad you can relate. Thank you for your comment, Roseanne!

  16. Kim G on November 26, 2013 at 3:11 pm

    As a parent of a child with narcolepsy, I thank you for articulating your feelings so well Julie. I do not have narcolepsy, but often feel they way you do from a guilt and shame standpoint…do I get him to bed on time, do I feed him the right foods, he will out grow it, how was your pregnancy, he is just being a boy, well the list can go on! We are not looking to be saved, but to be understood! Happy Thanksgiving!

    • julie on November 26, 2013 at 3:54 pm

      Thank you for reading and commenting, Kim! I can only imagine what it’s like to be a parent of a child with narcolepsy – thank you for supporting your son’s experience and raising so much awareness despite the sometimes “off” responses of others. Happy thanksgiving to you and your family. Your friend, Julie

  17. Katie Callison on November 26, 2013 at 4:54 pm

    The people who have posted above pretty much covered it. Thanks for being brave and posting. This is by far the worst part of having narcolepsy for me, as I already feel guilty over nothing about 95% of the time.

    Keep speaking your truth! We are thankful!

    • julie on November 27, 2013 at 9:32 pm

      Thank you, Katie!

  18. Lisa M. on November 29, 2013 at 6:13 am

    I am so sorry I am finally giving my reply to this, but I SO understand. In essence, Julie, he was questioning your faith. I too went through this, with well meaning ministers. I had a cataplexy attack at church brought on by the microphones going off.. one minister tried to bring me out of it by slapping me.. from there it went downhill. When trying to explain what just happened, I was asked why was I claiming something on myself and someone else chimed in with she didn’t believe anything was wrong with me, that I was just seeking attention. This was followed by some kind of seance in which they tried to drive this attention needing sleep demon from out of me… they tried to heal me with the well if you have belief that Jesus Christ is your Lord and Savior and you ask for healing, you can be healed and if you are not healed, you do not have faith.


    I was very hurt by their remarks, but I refused to be deterred from how God revealed this thing to me. I am a minister in training and I had done a good bit of research in regards to sickness and the Bible and the one scripture I studied continuously is in 2 Corinthians in which Paul talks about his thorn. It is my thorn and it is in my weakness that God can strengthen me so that HE gets the Glory on my accomplishments, KNOWLEDGE is power. If I don’ t claim this thing, I can’t walk in healing from this thing. An alcoholic cannot go to an AA meeting to get delivered from alcoholism without being able to claim, acknowledge and declare that he is in fact, an alcoholic!!

    Sickness is not from the devil and it definitely is not evil and does not require the driving out of demons. Praying for a healing will usually will not get you far, not that God can’t heal, because he can, but because healing is only given according to God’s Will. It may not be in your destiny to be healed.. one’s prayer should be in how they can be strengthen by it, pray to ask how to deal with it, pray to ask how to listen to your body, pray to ask God to talk to you and tell you what your limits are and THAT is how you walk in healing… it is more likely to be in your destiny to allow your sickness to strengthen you so that you are encouraging others in helping to deal with this disorder, which is what you have already done! If you had been healed, who would you have been able to help and encourage on how to deal with Narcolepsy?

    So the next time someone wants to tell you how you can get a Godly healing and question your faith due to a lack of wanting a healing, pose to them this question: If you were to tell a paraplegic how they can get a Godly healing and they prayed for that healing and still could not walk, would you dare tell them to their face that they do not have faith? That usually shuts them up.

    • julie on November 30, 2013 at 11:13 pm

      Hi Lisa,
      Thank you so much for sharing this thoughtful powerful comment. First of all, I’m so sorry that you had this experience with individuals questioning both your narcolepsy AND your faith. This is not fair. I love what you wrote about illness possibly strengthening you. Your perspective is so amazing.
      Sending big smiles and wakefulness your way,

  19. Stacia on November 30, 2013 at 6:29 am

    I have read this blog the day you posted it, but have been trying to figure out why Narcolepsy is God’s gift to me (as you have seen me post that question on the FaceBook groups).

    It just occurred to me tonight, that I too have experienced something similar to this by one of my very own best friends. When I was telling her about my symptoms, how severe they have gotten, to the point of memory loss (when I push myself through a sleep attack and carry on with brain fog), she replied with that I need to pray more and not let the devil take my memory away and make me sleepy…..

    I was amazed at her response! Yes, I have strong faith, but being a medical professional myself, some things are inevitable (thus a gift from God). I had to go a bit deeper into my symptoms, when they started, the sleep studies they did to diagnose me, etc. She still felt that I could go to God and be “saved” from his horrible condition.

    So, my thoughts was that she wasn’t very understanding of what I am going through and she wasn’t very open-minded to hearing what I had to say….

    So, with that, I can definitely say that having narcolepsy has taught me to understand others who may have such “invisible” conditions. Having narcolepsy has taught me not to be judgemental upon others, because they may be dealing with something much more detrimental. We don’t know what others are dealing with as we are not living in their shoes, their lives. Every single one of us are unique, including our Narcolepsy is unique to each one of us.

    Narcolepsy is a gift from God in that it teaches us Understanding, Patience, and Love among one another (in my personal opinion).

    Thank you for taking the time to read.


    • julie on November 30, 2013 at 11:10 pm

      What a beautiful comment, Stacia. Thank you so much for reading my post and finding similarities in your experience. I also feel that I am so less judgmental of others now that I have narcolepsy and know what that my struggles do not show on my face. I try to give others the benefit of the doubt. Thank you so much for sharing your thoughts here. Sending wakefulness and big smiles your way, Julie

  20. Tineke on December 7, 2013 at 7:35 am

    Dear Julie,
    I am so glad I found you/your blog. I am diagnosed a couple of weeks ago and I am so relieved, I was thinking I had Alzheimer (like my father at a very young age). I am making (little) adjustments in my daily life (diet, daily rhythm) but most of all: I allow myself to live with the effects of the disease, I am aloud to sleep a few times during the day and when I go to sleep at night I know that the hallucinations will come – and I will die (my “theme” is that I feel life slip away out of my body). I still wake up afraid and confused, but I get myself at ease instead that my husband has to wake up and help me. At work I get a lot of support, I can work at home on a bad day or work at home in the afternoon to get some sleep. I have had the most funny advices but also some rude ones. Someone said to me: ” you don’t have Narcolepsy, because you don’t fall on the floor, sleeping” and a other “sweetie” told me that it is because I am fat. Now I have also have to fight a battle with my doctor (neurologist) because he wants me to start with Xyrem, but I first want to see what the changing of my lifestyle and the acceptance is doing for me. What I really like about you, you’re not a victim! You’re a hero! I was looking for support(groups) in the Netherlands (where I live – therefore my not so A like English!), but I seem to find only people who feel they are victims. Thank you for being so open and honest. I think of you with lots of love and support.

  21. Lori on December 13, 2013 at 7:47 am

    But, have you tried…LOL!
    I was at a family potluck one time & there were
    three types of broccoli ‘stuff’. My sister couldn’t
    believe I wouldn’t ‘try’ any. I told her, I’ve tasted broccoli
    and I don’t like it. Oh wait! Maryann uses Velveeta
    In hers, you’ll like it! LOL: I don’t like broccoli. Try it steamed
    with lemon pepper. LOL! I DON’T like broccoli!

  22. Laura on December 25, 2013 at 8:02 pm

    Wow…this post really made me smile with recognition. Thanks for voicing the thoughts of so many of us in such an eloquent matter. Cheers of ‘mind over matter!’ as I struggle in yoga class make me grind my teeth…and the ever-helpful observations of ‘You look tired!’ on bad days make me want to shout out ‘Thanks, you look ugly!’ I never do, but I momentarily amuse myself with the thought. Thanks for being such an inspiration and positive role-model for me, Julie!


  23. Mo on December 26, 2013 at 4:44 pm

    Hear, Hear!
    I am gonna keep this short 🙂
    Think our prayers are needed to forgive these people of their ignorance 😉
    Hugs Mo

  24. Gina on December 27, 2013 at 6:34 pm

    “We forget that difficulty is a part of life, and no amount of yoga, dietary changes, prayers or medications will make us immortal.”

    …and may I add… ***more perfect than you obviously already are!***

    I have an eye condition that does cause me to have to have to do things differently than others. It’s not visible to anyone, my eyes look fine. It took time but I learned to *hide* it but practicing things so often I can now do *most* things like everyone else. Why? Because everyone offered the same sort of lame suggestions. It took me years to figure out it really was there problem not mine and now I just tell them I’m half blind and move along. I take no more *suggestions* for *cures* because I know there is no *cure* and I don’t need fixing! EVERYONE should read your post!

    Thanks for sharing!

  25. my my on January 4, 2014 at 4:22 am

    Never known why, but I always had a secret feeling inside that I just didn’t like yoga. Maybe it’s me, maybe it’s the “yoga people” (like my sister, who still thinks I’m just “lazy”), maybe it’s because yoga is the most evil force of balanced stretching known to the world. Ha! No, no, I’m kidding, I say “hurray!” to anyone who likes it and gets something good out of it. But for a person to suggest that it may cure your illness…that is just such an unbelievable and atrocious boof. The person should be embarrassed they wasted their mouth on saying such stupid words. I have a friend who was born with no legs. I wonder if anyone ever suggested yoga to her as a way to sprout them back afresh…Oh, of course not, they wouldn’t dare!
    I am in the process of confirming a diagnosis of Narcolepsy; it’s either that, my sleep doctor tells me, or “Idiopathic Hypersomnia”, which I like to call “Narcolepsy Lite”. But I’ve found, in reading for hours (and sometimes falling asleep for hours, sitting upright at my desk :)) that the chances of me NOT having Narcolepsy (with Cataplexy, Paralysis, Hallucinations, Confusion, Sleep Attacks and many of the other trimmings), when I witness how the parallels pile up between medical descriptions of symptoms and those hundreds upon hundreds of moments and elements of my life’s history (since at least the age of 5), well, the chances that I don’t have it seem about as good as the probability that I might be a frog. A beautiful, sleepy frog…
    This process has been so odd, so confusing, so maddening, so saddening. I miss the “good old days” when I thought I had non-causal depression. Now I can feel that what I have is a true grief inside of me, and I’m walking on a floor that I lived for years believing was my ceiling. My life has not been turned upside-down, it has been right-side-upped, but the turn is just as strong, if not stronger, knowing that I never knew what I always knew.
    I just want to stop here and say, I am grateful there are blogs like this for me to stumble across, because without them I don’t think I’d ever stop stumbling. Or, at least, I don’t think I’d stop stumbling without the presence of this giant raincloud of misunderstanding as my permanent companion. You are ALL raincloud murderers for me, the best murderers there are, and you deserve star-filled ribbons for the work of your words. If anyone asks you what you accomplished today, you may easily now say, “I helped heal an old girl’s heart.”
    In reading this post, when I saw the part about crying in the car, I felt like my heart’s response alone could be definitive proof of my Narcolepsy. (Or N-Lite!) The more I read, and see online, the more I am crushed when I realize that something I used to think of as “just who I was” might be as real and serious as those disabilities which are accepted, more visible, and less vilified.
    Thank you: All of you, for slumbering on ahead of me and making this path to help me find my way. Perhaps you don’t know, but you make something so very hard just a little bit easier for me. I don’t know what I would do if I was alone in the world, searching through microfiches in the library, reading yellowed pamphlets at the general practitioner’s office, or depending on the odd article in a medical magazine to try to figure this out. Instead of getting a grasp on this at the edge of age 38, I’d have to wait a few more lifetimes. But with your presence, I might have the chance to do SOMETHING in THIS LIFE!!! I am so excited, I could sleep it into the ground.
    Like I said, I’m still not officially diagnosed; but when I am, could I be in your club? I’m pretty sure I would fit in here…unless I am just “lazy and crazy” as I used to believe. But the chances are good. I can type and keep minutes and pay all my membership fees on time. I have a chihuahua who will bark if anyone falls asleep at our middle-of-the-day parties…
    your dream-friend.

  26. Melanie on January 9, 2014 at 4:38 pm

    “By insisting on easy solutions, my experience feels invalid — narcolepsy is somehow in my control or my fault. This makes me feel ashamed and guilty…. This shame is worse than any illness. This self-guilt is more toxic than any disease.”

    How these words resonate with my tired mind! No, I am not lazy. No, I am not unmotivated. No, I do not need more Vitamin C or red meat. It is difficult enough to fight one physical aspect of my mind, let alone the emotional impact of it, as well. Everyday, I must remind myself that this disease is not a personal failing and that I don’t need the layman’s conceding diagnosis to accept myself.

    Thank you for reminding me that I — no, we — are not alone.

  27. Dawn on January 14, 2014 at 4:55 pm

    What a wonderful post! I love how clearly you explained that when others offer potential solutions it feels like they are invalidating your experiences. But my favourite was “Your feelings about illness may not match my feelings” I love this sentence so much because it’s so true about so many different diagnosis people can potentially have. While not related to Narcolepsy, I know that I often am given sad looks and sympathy when someone first finds out that both my sons are Autistic, but I embrace who they are, exactly as they are. I am not looking to “fix” them because they are not broken. Just as you are not looking to be saved, you are simply looking to be accepted as you are.

  28. Robert on January 20, 2014 at 7:14 am

    I just found your blog today and I’m very excited about what is going on here. This was a great post. When I was first experiencing symptoms that were significant enough to diagnose, I was originally told I had mild sleep apnea that was running my sleep cycle. Its funny, but the c-pap seamed to actually help at times. Since then, I have tried many different methods of treatment.
    Like you, I have come to accept that narcolepsy is part of me. Being diagnosed was almost refreshing. I could explain what was going on even when others around me were clueless or even thought I was just lazy.
    Its 2am and I just woke up from a nap. I feel energized and I’m taking advantage of my energy. I’ve embraced the randomness of my schedule and I make the most of every moment.
    Thank you for your very encouraging posts!

  29. Catie McDowell on August 12, 2014 at 5:23 pm

    Thanks, Julie! Well said, as always. As a mom of a child with Narcolepsy I’m
    amazed at how often kind and intelligent friends have asked, “is your son
    better? Has he outgrown the Naercolepsy?” This is after I’ve said it’s a chronic
    illness, currently with no cure. People have a hard time just being with what is,
    without denying it or fixing it. It can be frustrating.

  30. Shannon on January 1, 2015 at 7:59 am

    I’ve had many trials and tribulations with my narcolepsy and have encountered many people like this. However, I do want to defend pharmacists as my journey to a proper diagnosis was very long and even more painful, but my pharmacist was nothing but supportive throughout the whole painful ordeal. Once my doctors realized I had narcolepsy and was not, in fact, “crazy”, she is the one that helped me successfully wean off a plethora of psych meds I did not need to be on (and subsequently did make me a little “crazy”). Her kindness during such a dark time is something I will never forget. I realize she may be one in a billion, but I hope not. Maybe with more information out there, thanks mostly to Julie, we will run into more empathetic people. That being said, Julie, you have made this journey that I thought I would never recover from, seem hopeful. I thank you so SO much for your book, your blog, speaking out, everything you have done!

  31. Estella Stevens on December 14, 2015 at 11:03 am

    I suffer from Narcolepsy/Cataplexy and have done for many years. I do not take any medication other than medication receieved from the Holy Spirit. I follow no religion or practice any but i am fully aware that although this condition attacks you in the flesh The Natural yet the battle is in the Spiritual. As i have begun to develop my relationship with God my attacks have subsided. Faith is an incredible thing and is not easy but with endurance and perseverence God will carry you through. Prayer is imperitive to win the battle with this condition. Dont knock it believe it try it. With God nothing is impossible I can not save anyone only the creator can do so. To be saved or not to be saved is an individual choice but not to be sniffed at.

  32. Gerald on January 11, 2019 at 4:48 pm

    Julie, I have N. Was diagnosed 4 years ago. Know I have had it since knee buckling in early twenties. For 6 months before being diagnosed I started collapsing when laughing. While taking all kind of tests for heart and head problems my pastor said it was probably spiritual. I knew it wasn’t. But after taking meds people know that I am more out going and my filter isn’t as good. I am too honest.
    I’ve worked on it and am a little better.
    I still believe in God and Jesus helps me through all things . And I am afraid I was one that said at times that people on anti depressants were crazy or just looking excuse. But without anti depressants or stimulants I couldn’t function. Some people can’t live without insulin. And I wouldn’t be as productive without Anti depressants, stimulants , or something to help me sleep.
    I am now 60 and I wish I knew what was wrong with me before. But Jesus is always there to help when I let him. And I have had a good life when I didn’t know what was wrong and a good life after. Thanks for your information on the internet.
    I hope some day all people realize that life is better when we do God’s will. He made us all different. And He wants us to depend on him.

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