Letter From a Person Living with Narcolepsy

Dear friend,

Do you remember that time we had big plans to do something amazing on the weekend? I told you at the last minute that I really wanted to go but I just couldn’t do it.  Well, I remember it. Because it was hard for me to make the decision to take care of myself instead of going to do something fun that I was really looking forward to.

What did I do that day?

Instead, I spent the day making sure I had healthy food lined up for the week. As part of my self-care routine, I took a few short controlled naps. Focused on physical and mental health, I drank a gallon of water and meditated. I arranged my calendar for the week so I would not miss any appointments, forget to pick up my prescriptions or miss a due date for my bills.

It was a really boring day. I kept thinking about how much I would have rather been with you. But while living with narcolepsy I am working really hard on self-care.

That doesn’t mean that I can’t have fun anymore. I still want to do awesome things with you. I still want to have a social life. But it does mean that I am learning to see what tips the balance in my life. And I’m learning to say, “No.”

Here is what I wish you understood about living with narcolepsy:

Narcolepsy is not the same as being lazy.

I know that you have to do all the same types of chores that I have to do, and you can get them done in the middle of your work week. You expect me to be able to do the same. But sometimes that just isn’t possible.

You see, my body attacked the Orexin (hypocretin) in my brain. Orexin regulates so many things that I took for granted before it was destroyed, like arousal, wakefulness, and appetite. While it may seem like I should wake up feeling amazing after 10 hours of sleep, my sleep is messed up too. My brain doesn’t do what it should when I am sleeping either. And sometimes I lay awake half the night trying to get back to sleep, the place I avoid all day. Its a rather ironic and frustrating situation to be in.

The sleepiness I feel is not avoidable. 

I am not bored when my eyelids are drooping. I am fighting to be there with you.  So if I excuse myself to sleep for a few minutes, its because I care about what you are saying and I want to remember it later. The sleepiness of narcolepsy is not something I can just push through. Sleepiness comes roaring through my head like a freight train, and if I try to fight it off, I end up with a massive headache, and my brain will feel stuffed full of cotton so nothing works as it should. Sometimes I can’t even remember where I was or what I did during that fight behind my eyelids. So while I am able to sit upright and appear awake, it would be much more productive for me to just take the nap my body is demanding.

 

Of course, I can take medication for my sleepiness, but while it has the ability to keep my eyes open, it does little for the cottony fog and lack of ability to focus. If I want to clear the fog, I have to close my eyes and sleep for a while. Many people think napping every day is luxury, but when it is just as necessary as using the bathroom, it feels more like an inconvenience.

These waves of sleepiness are unpredictable. 

They can appear out of nowhere for seemingly no reason at all. During an episode like this, I am unable to drive, or possibly walk effectively. My cataplexy symptoms will increase and it could be dangerous for me to push through the sleepiness. This makes it difficult for me to maintain a schedule. While it may seem simple to set aside an hour to have coffee with you, I feel awful when I have to call and cancel on short notice when I realize I am not able to drive, or I am too foggy to be mentally “present” for our conversation.  I wasn’t prepared for this aspect of living with narcolepsy.

Cataplexy is a sudden muscle weakness that usually occurs when experiencing strong emotions. It is different for different people, but in my case generally occurs in my hands, arms, and jaw. This means I may begin slurring my words or something may slip out of my hands when I laugh or feel some other emotion.

In more severe cases, it can result in a complete collapse to the floor where I remain unable to move or speak for a matter of seconds or even minutes. It’s a vulnerable position to be in, so you can imagine why I work so hard to avoid situations where I may experience this. It puts huge stress on my social life, and emotionally it is a ginormous weight I carry around.

Talking about it is hard.

Sometimes, when we talk about this, I am moody and irritable and may say things I don’t mean. I get so frustrated living with narcolepsy, but I end up taking it out on myself and other people. It really interferes with my moods. But when I am well rested, I feel guilty for the way I treated you when I was tired. It’s difficult to deal with my emotions and talk about them with you. I know it’s not easy to understand my situation. Please don’t assume I’m asking for pity or making excuses for my behavior. My goal is to find a way to manage my emotions and self-care is the tool I am using now.

You don’t need to be perfectly understanding.

I just want you to know that I am doing my best. It’s challenging to live in a body that I don’t trust and cannot control. It is also emotionally draining to try to conform to all of the expectations society has placed on me. Maybe you don’t always see how much narcolepsy is affecting my life because when I go out for social occasions I try to be at my best. But behind the scenes, there are times when I can’t gather my thoughts enough to finish a sentence. I can’t think of the most simple words and I cannot focus on even the most menial of tasks like brushing my teeth without getting distracted.

 

Sometimes I need a little help or support and I don’t know how to ask for it.

I may even turn it down if you offered, because like anyone else I have pride and want to feel independent. But I am working on improving that.  I am learning that living with narcolepsy is a journey. As my friend, you may be wondering what you can do to help.

I appreciate when you call me just to listen to how things are going. If we make plans, maybe we can have coffee at my house instead of across town. And if my dishes are not washed and I haven’t taken a shower please don’t judge me. I’m doing my best. Instead of telling me what you have read or seen or heard helps with my type of symptoms, ask me what I want and what I need more support with. I know your suggestions come from a place of love. But if one more well-meaning friend tells me exercise will help me, I may snap.

You can ask me questions about living with narcolepsy.

While I don’t want our relationship to be all about me and living with narcolepsy. I could really use a friend or two that understands what I am dealing with. Ask me what it feels like. I could really use some emotional support. I don’t need you to say you know exactly how I feel. In fact, it would be better if you say the opposite and tell me you can’t imagine how I feel since you haven’t experienced it.

In return, I would love to listen to some of your real, deep, and hard to talk about issues. Just because you don’t have narcolepsy doesn’t mean you don’t have issues that are hard to talk about. I am here to listen as well. And I won’t judge because I know how it feels to be judged. I crave real social connection, not the run of the mill surface small talk that I can have with anyone off the street. I want to engage in deep conversations with you and feel a live connection between us.

So please don’t write me off as a friend because I’ve canceled the last few times we made plans.

Please don’t think I’m lazy or unmotivated. I am doing my best. And all I ask from you is that you do your best to understand. I am not narcolepsy. But it has a bigger impact on my life than I would like it to. Taking care of myself is the best way I know how to reduce this impact. And your support means the world to me.

Thanks for reading this through to the end. I’d love to meet with you and chat about any questions you may have, or about what is invisible but present in your life that you want to share.

Love,

A Person With Narcolepsy

I’d love to hear your comments or suggestions about what you would say to friends that you want to understand your chronic illness.  If you are living with narcolepsy, let me know how you talk to your loved ones about it.