If My Diagnosis Journey Would Have Gone Differently
My diagnosis journey was a long 20 years full of misdiagnoses and misunderstandings. When I was young and until I was diagnosed, I always felt like something was off but I never knew what. I tried so many medications and treatments but none of them took this feeling away.
My sleepiness did not start until around middle school or high school and got worse as I got older. I tried every excuse to stay home from school because I was so tired and just wanted to sleep. I had no idea that being that tired was not normal.
What I wish had gone differently in my diagnosis journey seems to be a long list, but I will just mention a few things.
I wish I had been diagnosed at a younger age
I think the biggest thing I wish would have gone differently is getting diagnosed at a younger age. I think my life would have been completely different if I had been diagnosed when the sleepiness started and maybe I would have stayed in school. I don’t blame anyone for it taking so long to get diagnosed because when I look back at my life, no one knew what was going on with me and narcolepsy wasn’t really very known yet.
I wish narcolepsy symptoms were better known
Recently I have really started to look back at my childhood. I stopped napping around the age of 2 and I always stayed up late at night watching TV. For many years, I needed my mom to sleep with me because I was afraid that someone would come into my room or look in my window.
I realize now that those moments could have been hallucinations and I didn’t even know it. I had a lot of anxiety as a kid and it happened a lot at night and so it also makes sense now that it was most likely the vivid dreams or hallucinations causing this.
I wish that people would have been more aware of these things when I was younger because as a kid, I had no idea what was going on and I thought every kid was like me.
I wish people had not said I was faking it
As my sleepiness started to kick in when I was in middle school or high school, I started to miss a serious amount of school and every person in my life did not understand why I did not want to go. I would always get told I was lazy or that I was faking it just so I did not have to go to school.
I used to love going to school until I was bullied and started getting sleepy. I personally think this should have been a sign that I wasn’t just faking it. If my parents and doctors would have been more familiar with narcolepsy like they are now, they would have gotten me tested.
I wish my first sleep study went differently
A big thing that I wish had gone differently is when I went to a sleep specialist my senior year of high school, which was 4 years prior to my diagnosis. My doctor had me do a sleep study and it came back normal so he told me that there was nothing else he could do and sent me on my way.
I got this sleep study because I had chronic migraines and had trouble sleeping at night. I don’t blame this doctor because I am sure that narcolepsy was not very known in 2015 where I live. It just is unsettling knowing that I was so close to being diagnosed but because narcolepsy was so unknown, I did not get my diagnosis until 4 years later.
This is why awareness is important to me
The bottom line is, I wish that narcolepsy was more known when I was a kid because my life could have been so much different. I do think that my journey has made me the person I am today and I am thankful for that, but I so wish I would have been taken seriously and got diagnosed sooner.
I wish I knew what I was experiencing as a kid because then I could have expressed it to my parents. I don’t blame anyone for my diagnosis taking 20 years because there was so little knowledge of narcolepsy until very recently.
This is why advocating and spreading awareness is so important to me. I do not want someone else to have to go 20 years before getting their diagnosis because they don’t know that how they’re feeling is not normal.
What do you wish had gone differently during your diagnosis journey? Comment below, I would love to hear about it!
Do you feel that your doctor understands narcolepsy?