Narcolepsy and relationships – It’s our job, not theirs

By August 25, 2017 8 Comments

Narcolepsy and relationships


I get the question a lot.

At least an iteration of it.

It goes something like this:


How do I explain to them what N feels like?

How do I properly convey to my husband what I feel on a daily basis?

He should automatically know shouldn’t’ he?

Why is she so misunderstanding?


I have one simple answer for all of these questions.

It’s our job to be empathetic, not theirs. You can only control your reaction. Not their lack of understanding.


They will comprehend the disease of Narcolepsy just as well as you can comprehend diabetes, or Alzheimer’s, or Cerebral Palsy.


There are experiences and afflictions that can not, and will not be conveyed via just words. Maybe a book can help. Maybe it’s a podcast you can show them. Or maybe it’s a documentary.


But whatever device you may choose to turn their sympathy into empathy. It will always fall short.


And that’s okay my friend.

You don’t need them to.

All you need to do is develop your empathy.


You, a person without type one diabetes, will never truly know that struggle.

Just like them, a person without narcolepsy, can never truly know yours.

I’m not in anyway advocating others to walk all over us, please don’t misunderstand. I’m simply encouraging a change in perspective while keeping respect for yourself high.

So decide today. That you’re the one who will be empathetic. Empathic to their ignorance. Their ignorance is not because they don’t love you, or because they’re mean-spirited. It’s because there is no substitution for first handed experience, and there never will be.

Once you embrace that. The pain of “why don’t they get what N is like?” will wash away.


Please do me a favor. Make the decision today that you will give up on forcing them to understand. When you do, things get a little bit brighter.




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  • Barb says:

    I have been searching and researching the disease and it’s process. Thank you for this website. I cam upon it by accident as there is not much more than support and the research without much hope. You have put many things into perspective for me as well. My spouse does not get it and thinks I am lazy. I work full time, still. You are so right other will never get it. I plan to continue for as long and I am able. I am getting closer to retirement with hope to retire early. I do try to maintain a regimented sleep schedule already. Now the meditation and diet I am to start on. I have found many things to work on in my labs with B Vitamins and building my iron that will help. It is always stress that seems to pull me into a bad day, so far. I am doing much to unload my full plate of issues. I had never seen in all the research anything about my diet. I thank you again! I am sure it will help.

  • Chad D Niehoff says:

    I relate with Cheryl’s statement of “being in a daily struggle to do and be and then be thought of badly”. The things I want to do and the income I desire to have are based on jobs that are usually at desks. The jobs that I can do and keep me going during a day pay less than I desire and cost more of my body than I can afford. As I age I have less and less physical wear and tear to pay with. I’m afraid that it only gets worse from here. I’m afraid those around me will only say “just wake up!” I’m afraid I’ll always be in ‘brown out’ mode – not fully sleeping and not fully awake. I hope I can come to some sort of peace about this, some sort of workable balance, some sort of dignity. Right now, today, this low moment, I don’t see that happening.

    • Peter says:

      Hello Chad, there’s always hope. The fact that you reached out means that you’re searching. I’m not sure if a low sugar diet will be what works for you. Or a job that keeps you alert. Just recognize the fact that there are solutions to your challenges.

      I’m rooting for you.


  • Cheryl Lekousi says:

    As a mother of an adult with N/C I have watched the struggle and been aware that without the knowledge of the disease it looks (please forgive this description) like laziness. How awful to be in a daily struggle and then be thought of so badly.
    I have been guilty of doing too much for him because I don’t know when he’s having a hard day. he calls me on it though.
    So this article is true, we on the outside of N can’t understand what it’s like. But honest discussion helps.

  • Liss says:

    So hard to do. I always feel like I have to explain, rationalize, make excuses, be superwoman. I'm so tired….my soul has finally caught up with my body on this fatigue called life. Bleh


  • Jennifer Krueger says:

    Beautifully put really put things into perspective for me 

  • Mandie says:

    Very inspiring. While my way of accepting has been to pretty much try to ignore it and just keep keeping on every darn day bc I HAVE TO with young children. Then letting the irritability, forgetfulness, anxiety, etc eat at me making me feel worse, I HAVE to accept that my children, husband, mother, friends, and everyone else will NEVER (at least I pray) know what it feels like. No matter what explanations I give my 4yr old that "mommy needs a little more rest", or my husband, or anyone else….it ALWAYS falls short or feels like a sorry excuse. I can't let it entrap me, I must prevail at life…just now accepting that others can never understand. 

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