WebMD: A patient describes her experience with discovering that she has narcolepsy.
When I heard the doctor say there is no cure for my narcolepsy, I was overcome by an odd combination of relief and shame. At 22 years old, I was going to have this condition for the rest of my life. I knew that I would have to make some adjustments. But looking ahead at my life, I didn’t know how I would come to terms with it or how I would be impacted in the future. I felt hopeless, especially when no medications worked for me at the time. It took me a while to be at peace with the situation, but I had to realize a few things first.
You will learn as you go. The thing about chronic illness is that it’s not all about positivity and inspirational quotes. There will be days where you doubt yourself, you’re negative, or you don’t have the energy to do the things you planned. I realized that a key part of this journey is making adjustments instead of focusing on overcoming obstacles. Things will be challenging, but they will get easier. I reevaluated what makes me happy, what is worth my energy, and my definition of success.
Self-acceptance is in your best interest. At first, I was shy about sharing my diagnosis, because I was afraid of being misunderstood or not taken seriously. I joined support groups that helped me feel accepted in a social setting but making the decision to accept myself was ultimately up to me. I started to see that I had formed opinions about myself based on what other people said, and that I got my validation from others instead of from myself. Let’s say your best friend called you up and said, “I just got diagnosed with narcolepsy and I’m feeling very overwhelmed.” Would you tell them that they should feel hopeless and might as well give up because they’ll never be able to accomplish anything? Or would you tell them that you support them and can’t wait to see the great things this journey teaches them? If my best friend doesn’t deserve to be put down, what purpose does talking to myself like that serve? That is not going to change the situation, and it doesn’t matter what anyone else thinks if they haven’t walked in your shoes.