Accepting that you are not "just" tired is the first step

By Steph, Narcolepsy-cataplexy syndrome, Germany, February 23, 2021

I cannot really remember when it started, neither can I remember how it felt like no to be tired or being able to trust my body to get me through the day without a fight. What I do remember was going from having the best grades at school to being so tired that I nearly failed my last year of High School. Being a teenager struggling with teenager stuff I thought for a while this tiredness was probably the product of some kind of depression, except life changed, it got better, and I was happy, but this never truly went away. Some days were better than others, and for years I convinced myself I was lazy, or I simply studied too much, or went to bed too late, or had a bad night sleep...every bad day I would look up which excuse could fit me better to justify why I was this tired. Nearly 14 years later, I reached a breaking point, there is so much tiredness one can handle when working 9 to 5. My partner was a big support in the process of accepting that maybe I was not "just" tired and that I should seek for professional help to figure out what's wrong.

After one upsetting visit to my GP, in which I had to convince him with tears in my eyes that something was not right and that no I was not depressed but feeling like this was certainly making me feel that way, I managed to get an appointment with a neurologist. Nearly a year later I finally got a space at a sleeping clinic. No one really prepared me for what was going to take place. I was lucky to be surrounded by lovely people because the entire process felt lonely and terrifying. I was constantly fighting the excitement of getting answers and the fear of what these could be, “what if they find something really bad?” Or “what if they find nothing at all?” I would describe my days there as a rollercoaster of emotions. The panic of having my head and body full of wires, the relaxing days under the sun at the window reading, the strange feeling of falling asleep during the multiple sleep latency test, the fun time getting to meet other people around, and the scary feeling before and during the spinal tap. When I met with the neurologists at the clinic, and I heard them confirm to me that it was indeed Narcolepsy I felt happy, I thought wow all these years, I am not lazy, something is actually wrong. Of course, the next step is knowing, this disease has no cure and so an entirely different thing is knowing that feeling is here to stay, but this time I was not alone in the fight and hopefully with the right meds, I could get some help in this fight.

I was given different alternatives for my treatment and I decided to go for the one I thought was best for me. I think that is an important aspect when starting your treatment, find the one that best suits YOU. It has been nearly a year and a half since I started my treatment, and all I can think of is how lucky I am to have had such a smooth process after all, I have since read a lot about people struggling for years to even have their GP’s attention and even being misdiagnosed. I can have quite stable days most of the time, of course Narcolepsy is heavily linked to emotions so some days, when I am sad, it is harder, but overall starting a treatment was lifechanging. On a personal level my fight now is different, it is about identifying my limits and accepting them, being kinder with myself. I am extremely hard working so when I feel my best, I will take that moment and make the most of it, and my instinct tells me to keep pushing even when my body tells me to rest. Finally, there is a lot of healing to do too, over a decade telling myself I was not good enough, that I was lazy, it gets the best of you, so I am working on forgiving, other and myself for putting these thoughts in my hear. I do feel the future is brighter, and believe me I am not what one could call an optimistic person, but being surrounded with people who love you and having a good support system or a network of people facing similar challenges make the whole difference.

I don't know if anyone will ever read this message, but if you do, know you are not alone, no matter how isolating this disease might feel.


*Find others with Narcolepsy on RareConnect, the online platform for people affected by rare diseases

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