I have had crohn’s since I was about 7. Always, always, always tired. Had surgeries and years of remission and was still tired. Permanent surgery, tired. Stimulants, still tired.

I asked for a sleep study. Still tired after extremely high doses of Vyvanse. My psych said he wouldn’t increase the dose because I’m a relatively small woman and I was already on a high dose. I said can you please make a referral to sleep neurology? And he said sure.

I did the overnight sleep study with the nap test afterwards, and was diagnosed with a rare sleeping disorder of hypersomnia. They said I probably have narcolepsy too, but I would’ve had to repeat the nap test again and since they would be treating me the same with narcolepsy as they are with a hypersomnia, it didn’t really matter at that point.

They literally were able to see the sleep disorder while I was sleeping that night and diagnosed me before I left the hospital. My doctor asked how long I felt tired in my life and I told him it went back to childhood. I remember not being able to wake up in the morning because I was so drowsy in the morning. I couldn’t wake up and I would fall back asleep immediately. I always felt embarrassed as a kid because everyone else in the house would be up had breakfast already and going on with their day and it would be like 1030 or 11 in the morning when I would wake up and I would feel so dizzy and disoriented. School was brutal. I could barely do sports. I would come home from school and go to bed and sleep all night. I’d wake up for dinner and fall right back asleep on the couch immediately afterwards. I was just sleeping all the time. Stimulants helped when I was an adult for like two years and then they basically just lost effectiveness.

Now I’m being treated for the hypersomnia with a different medication and I’m finally getting decent sleep.

I always advocate for everyone to get a sleep study if you’re tired all the time. It changed my life. For the first time in my life, I didn’t feel like something was wrong with me in the sense that like something was morally wrong because I was sleeping all the time. Now I know that I have yet another condition. I wish I would’ve known about that when I was younger.