a man with narcolepsy looking nervous clutching a notebook and a folder in a doctor's office

It's All in My Head

Recently, I had a very unhelpful specialist appointment for my chronic pain. I won't go into too many details, but basically, I left feeling incredibly invalidated. Like I had made up all my issues. I felt like a fraud.

This got me thinking about a few things. Those of us with invisible illnesses like narcolepsy, or chronic pain, can go through periods of doubting our experience. Without that visual, physical symptoms to show anyone, we can begin to feel as though we are making it up. Like it is all in our heads.

I know that personally, I experienced this kind of imposter syndrome for such a long time before I finally received my narcolepsy diagnosis. In my most recent experiences, I learned a few things about myself, and the process of diagnosis that I wish I could go back and tell myself when I was living undiagnosed with narcolepsy.

Trust your experiences

Always remember that you are the only person who can know exactly how it feels for you, to experience what you are experiencing. Sure, there are lots of people with similar stories to you. With similar symptoms, experiences, and diagnosis'. But none of them have lived your life.

This means that you are the only person who can truly know when something is wrong. Trust this feeling. It can take years of fighting for answers, and many different doctors, but please don't give up. Trust that everything you are living with is real.

Find your support team

Even though it may feel like a lost cause, there is always someone out there who is willing to fight for you and search for answers. Whether it be a GP, specialist, psychologist, or loved one. It can take one person to get you on the right track to finding a crew of professionals who are dedicated to finding answers for you.

It is so important that you 100 percent trust any medical professional you are dealing with. I know that it can be so hard to find someone like this, and personally, it took me 3 different sleep specialists, all with different opinions and testing, before I found the one I trusted wholeheartedly. It sounds exhausting to keep searching, but it was so worth it!

Be prepared

Okay, so this could just be the perfectionistic, overachiever part of me coming out. But I found it incredibly helpful to go to any appointments I had with all my relevant information. I had all my past tests and results, I kept a sleep journal, I had written down symptoms and questions I wanted to ask.

I went into my first appointment with my last sleep doctor with a notebook full of information. I knew that this way I would not forget anything or walk out of the appointment with anything left unsaid.

Show self compassion

This is the most important of all! Remind yourself that your experiences and feelings are valid and real. Remember that even invisible illnesses deserve to be seen and that someone out there will listen and understand your experiences.

How do you advocate for yourself? Share your story with our community below.

By providing your email address, you are agreeing to our privacy policy. We never sell or share your email address.

More on this topic

This article represents the opinions, thoughts, and experiences of the author; none of this content has been paid for by any advertiser. The Narcolepsy.Sleep-Disorders.net team does not recommend or endorse any products or treatments discussed herein. Learn more about how we maintain editorial integrity here.

Join the conversation

or create an account to comment.