Parenting
I finally got my official diagnosis of narcolepsy type 1 today. After struggling for 13 years, I finally have my answer.
But along with the relief has come a huge amount of grief for everything narcolepsy has taken from me.. especially from my experience as a mother.
Being exhausted and sick through my entire pregnancy. Not being able to work. Sleeping 14 hours a day before becoming a mom, then suddenly surviving on 6 hours of broken sleep. Breastfeeding while feeling like my body was already running on empty. The endless newborn nights where you don’t sleep day or night.
Some of these things are normal parts of parenting. But the guilt comes from knowing I was fighting a neurological disorder the entire time without understanding why everything felt so impossibly hard.
I spent years blaming myself for being lazy, unmotivated, weak, overwhelmed, emotional, or not “handling motherhood” as well as everyone else seemed to. I pushed myself past my limits constantly because I thought everyone felt this way and I just wasn’t coping as well as I should have been.
Now I know there was a reason.
And while I’m grateful to finally have answers, it’s hard not to mourn the version of motherhood I thought I would have if my condition had been recognized sooner.
And now my doctor is telling me I need to be on two forms of birth control because medications like modafinil can cause birth defects. If I ever want to have another child someday, I would have to stop treatment completely. My heart feels broken all over again, because I always imagined having another baby one day.
It’s such a cruel feeling to finally get answers and treatment, while also realizing how much this condition continues to take from you.