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Tara’s Story

Want to tell us about your journey? Share Your Story.

“Remember to give yourself grace.”

Tell us how long did it take for you to be diagnosed with narcolepsy or idiopathic hypersomnia?
It took me 20 years to get diagnosed with narcolepsy.

Briefly share the steps you took along the journey?
I always felt like something was off most of my life, but just did not know what. I got misdiagnosed with ADHD, ODD (oppositional defiant disorder), anxiety, and depression. I never knew all of the symptoms I was having were not normal. I thought I just was more tired than others and I was just having bad dreams. I missed a lot of school in high school, which made me fall behind and barely graduated high school. I always made excuses to stay home and just sleep. Eventually people started to say I was faking it, it was just in my head, and that I was lazy. After high school the sleepiness even got worse and I could barely keep a job, did not do well in school, and started falling asleep while driving very frequently. I always told doctors I was tired all the time but most of them just said I was depressed and just kept trying new medications that never worked. I had a sleep study done when I was 18 years old and they said it was “normal” and that there was nothing else they could do. Jump to 4 years later, at age 22, I was at a doctor’s appointment for another condition I have and he asked me how I was sleeping. I said “Honestly…I could sleep 24/7, and still be exhausted.” He said that wasn’t normal and he got me into a different sleep specialist who had me do a sleep study and MSLT, which is when I was then diagnosed with Narcolepsy.

Can you share the 3 things that were most challenging about this?
One thing that was really challenging, is feeling alone and not knowing what I was experiencing was not normal. I think my life would have been completely differently if I would’ve been diagnosed early on in life. Missing out on so many things growing up made it very difficult to keep relationships with people due to wanting to sleep all the time. Having people tell me that I was lazy, faking it, and that it was all in my head, really made me start to think that what they were saying was true, which really affected my mental health, which made doctors think I was depressed and anxious, so I had to take a lot of different medications that were not necessary.

Is there anything you would have done differently?
I would have continued to advocate for myself earlier in life and not let what other people said get to me. I wish I would have spoken up more when I knew the medications I was taking were not working because who knows what those medications did to my body.

What would you tell newly diagnosed people with narcolepsy?
Know you are not alone. Advocating for yourself is really important and having knowledge on narcolepsy is helpful. Having a new diagnosis and not knowing what is next can cause you to go through the grieving process, which is normal and different for every person. Remember to give yourself grace and it is okay to say no and change plans.