Do not measure yourself against me. Or anyone else. Do not lump people with narcolepsy or other chronic illnesses into one group and compare how we cope.
Don’t you dare use my story to shame someone else, or even yourself.
You don’t know where I’ve been. You don’t know the dark places I have seen. You don’t know the stories I have buried deep inside my chest, with layers and layers of protection built around so each heartbeat doesn’t hurt.
If you care about someone with chronic illness, you will not compare them with others, or push “solutions” in their face.
I don’t have all the answers. Everyone’s path is different and everyone should know that they are enough exactly where they are right now. Including you.
All you see is my Instagram feed. You hear my stories bragging about how I travel the world and work online with a chronic illness. Because that is the stuff that is easy to talk about. I don’t showcase the days when I’m down. I don’t open up much about the years I spent in the dark before I was able, no, before I felt I deserved to move into the light.
You want me to tell you how I got from where I was to where I am?
If I created a roadmap of my path, it may be something like this.
1. Sleep at every possible moment until everyone around you is worried and persists to find you a diagnosis. When that process stresses you out, retreat into sleep even if you are in class or at the lunch table with your first-grade classmates.
2. When they give a name to your specific group of symptoms, take that diagnosis and absorb it into yourself, create your identity around it, measure your self-worth by it and allow it to limit you in everything that you do. Adopt the phrase, “I can’t because I have N” (replace N with any other diagnosis or list of diagnoses that you receive)
3. Take every medication prescribed, report every side effect and take what the doctor prescribes to treat the side effects. Continue endlessly until you no longer feel anything. Nothing matters but controlling the beast that is sleep (substitute your most troubling symptom here).
4. Decide that life just isn’t for you but make sure you always smile and tell everyone you are fine. Start a lifelong habit of self-harm as your coping mechanism.
5. Clean up your mess and swallow all the pills you have been collecting the past months for a swift and easy exit plan. Recover pissed off but not enlightened. Swear to do better next time.
6. Take enough anti-depressants and anti-anxiety medications to keep doctors from sending you back to a psych ward. Assure everyone around you that yes, you are cured and feel wonderful and they don’t have to worry about you anymore.
7. Go through the motions because that is what everyone expects you to do. Don’t ask for any help. Tough it out and don’t let anyone see how much you are struggling. Stop going to doctors because they are expensive and you have to lie to them anyway.
8. Find a partner and create the most unhealthy codependent mess you can imagine. Stay in that toxic relationship for years because you don’t think anyone else will love you if you leave. Start to discover yourself, and when you are finally done self-sabotaging, leave.
9. Flounder about for a year or so feeling strangely free but also silly and homeless traveling from place to place and calling yourself a digital nomad.
10. Go to Asia to visit a friend and realize one year later you no longer have that friend, but you have a new life. Find a lot of time on your hands and start a blog about how you are succeeding despite your illness. Accept that you are not The Problem. A society where anything that doesn’t fit the status quo is a problem is really The Problem. Then you may find yourself feeling quite alright.
Wow, my whole roadmap guide is only 10 steps! If you are willing to give this guide to a loved one to show them the way to “overcoming narcolepsy,” then you are even dumber than I thought.
Don’t tell people with chronic illness how to deal with it. Instead, show them you care, support them, and let them know that they are enough. No matter where they are on the journey, their experience is valid and they are not broken.
I’ve started to share my story about having narcolepsy after more than 20 years of symptoms. It took me that long to get to a place of self-acceptance. And the minute I did, people began to use my words against others.
“If she can manage her symptoms with x, y, and z then why can’t you?”
This is my message to anyone who takes a glance at where I am today and wants to push someone else into my shoes. I do not share my story to give you that power. I share my story in the hopes that someone will read it and feel empowered, or inspired to go for their dreams.
Don’t use my words as weapons against my own kind.
If you see a person with chronic illness as a problem, then you are a part of the bigger issue; a society where being different is not acceptable. Most of us would feel a lot better if we stopped trying to keep up with the expectations of society and just allow ourselves to be as we are. It’s not an easy task.
But if there was one thing that I could identify that has helped me cope with narcolepsy, it's realizing that my value is not determined by anything I say, do, or accomplish in life. My value is innate, and so is yours. You don’t need to measure yourself or anyone else against anyone or anything.