Being Vulnerable with Narcolepsy Works

It’s hard not to look at being vulnerable as a bad thing, but today I’m here to tell you that being vulnerable with narcolepsy works wonders. I have gained so much by daring to be vulnerable, and today I am taking that to a new level. Today, I am committing to using this space for more raw, unedited, real writing about what I’m experiencing on a day-to-day basis.

I’m Not a Vulnerability Expert

I won’t pretend to have it all figured out or know all the answers. But I have a lot of experience. Living with narcolepsy has been a challenge from day one, but it doesn’t have to feel like a life sentence. In so many ways, narcolepsy has pushed me to grow and evolve. I’m working on becoming more and more transparent about what this process is like. I haven’t always been willing to put all the messy stuff out here on the internet for anyone to find it. I kept it hidden away in my journal and waited until things were more clear and polished to write about them. But after rereading Brené Brown’s Daring Greatly for the third time, I realized this is what I need to do.

If you haven’t heard of Brené Brown, please watch her famous Ted Talk and then come back to this. I promise it’s a great use of your time.

I’m not a professional at being vulnerable, but I have had many moments where I used incredible amounts of courage to overcome my fear about what other people might think and say to fully be myself. Those are vulnerable moments.

I am willing to make mistakes and admit that I am wrong. So if you disagree with me, I would love to hear what you have to say. I appreciate discussions that involve opposing points of view. So let’s dig into what this is really about.

How Being Vulnerable with Narcolepsy Works

Chances are if you have found this page, you or someone you love has narcolepsy, a chronic neurological disorder that affects the sleep/wake cycle. While symptoms vary, for this moment, I am going to focus on sleepiness, and in the coming days, I will cover additional symptoms like brain fog, cataplexy, and hypnogogic and hypnopompic hallucinations.

In a nutshell, when we are intentionally vulnerable and open to the world, our experience of these symptoms changes. In some cases, it may reduce the frequency of the symptom, the intensity of it, or even remove it completely. Let me explain.

“There is literally more space inside my physical body for me to be me, which results in me feeling more energetic, more charged up, more physically capable to take on the day!”

Excessive Daytime Sleepiness (EDS)

It’s hard to define what EDS really means because there is no hard line for what is considered “excessive”. We can’t take its temperature, or measure its weight to know that it’s too much. It’s all self-reported information about our personal experiences. When it comes to getting diagnosed with narcolepsy, it is an emotional experience of its own kind.

We feel we have to justify just how exhausted we feel. Doctors may point fingers at us to highlight the unhealthy habits that could be contributing. They may say it’s all due to stress. Some doctors will only see psychological causes. No matter what that experience is like for you, it is real. What you experience is real and it matters.

When we are looking for a diagnosis, we often feel extremely misunderstood. We feel alienated. We feel alone.

It’s so hard to express what it feels like to be inside a body that is not functioning as society expects it to. And we transfer those expectations from society onto ourselves. I have often felt betrayed by my body, even hated it.

Embracing Our Bodies

Something that I have noticed while working with people with narcolepsy, as well as others who are not experiencing any chronic illness is how hard it is to embrace our bodies. We often compare what our body is capable of to what someone else’s is doing. We measure our self worth by what we can do instead of who we ARE.

“I will love my body when _____,” is one of the most dangerous phrases I ever let into my consciousness. No matter what we put in that blank, it keeps accepting our own body as something that will happen in the future, therefore it will never be in the now. Even if or when we reach that goal in the _____, we will realize we have set new conditions for love.

Loving Unconditionally is Vulnerable

Loving our bodies unconditionally is a vulnerable thing to do. It means accepting imperfections. It means allowing others to see that we have flaws. But accepting ourselves with narcolepsy, including our bodies is one of the most powerful things we can do to take back agency over our lives.

So just this past week, I have been working on accepting my physical body more and more. For the last two weeks I have been incredibly sleepy. Usually, I feel more or less like I have managed the symptoms of narcolepsy with things like nutrition, lifestyle, supplements, and naps.

When I feel extra sleepy, its easy to slip into judging and blaming myself. I question what I ate, if I meditated long enough, if I remembered to take L-CM, and how I have impacted my own state of being. I enjoy taking responsibility for myself and how I feel.

It’s hard for me to accept that I am not fully in control. I am working on accepting that my body is human and is impacted by things I do not fully understand. I am choosing to love my body, whether or not it is capable of doing the things that I want it to do.

A wise teacher asked me to make a list of the demands I make of my body each day. It was a pretty long list! And the cherry on top was that expectation to “look good while doing all of it.” I never realized how much pressure I was putting on my body to perform and to be perfect.

What are the things you absolutely require your body to do for you? What are the things you continuously push it into being or doing? How could you lessen the demands on your body and be more grateful for all that it is doing?

Making Space in the Body

Each day I learn more about how my body holds past traumas, and how it is my responsibility to release them so that I have more space inside my body for my spirit to live. I am working through that with a coach, week by week. The amazing thing is, the more I clear out, the more present I feel. There is literally more space inside my physical body for me to be me, which results in me feeling more energetic, more charged up, more physically capable to take on the day! I am proving to myself how being vulnerable with narcolepsy works.