Feeling frustrated when family doesn't "get it" is one of the most common experiences shared by people with narcolepsy. You're definitely not alone in this.
A MyNarcolepsyTeam member put it well: "It's those who don't understand what we go through who tend to mistreat us." That kind of dismissal stings, especially from Show Full Answer
Feeling frustrated when family doesn't "get it" is one of the most common experiences shared by people with narcolepsy. You're definitely not alone in this.
A MyNarcolepsyTeam member put it well: "It's those who don't understand what we go through who tend to mistreat us." That kind of dismissal stings, especially from people closest to you. Here are some ways to help bridge that gap with family:
- Educate them directly — invite them to a doctor's appointment so they can hear about narcolepsy from a medical professional
- Share resources — point them to medically reviewed articles about narcolepsy symptoms and daily challenges
- Be open about your needs — let them know specifically when and how you need extra support
- Involve older kids — as children mature, they can become surprisingly great allies and helpers
Sometimes family members just need time and the right information to truly understand what you're going through. If family dynamics feel really overwhelming, asking your doctor for a referral to a social worker or family therapist can be a genuinely helpful step. Having a neutral third party explain narcolepsy's impact can sometimes land differently than hearing it from you.
And on the harder days, connecting with others who truly understand — people living the same experience — can make a real difference.
AI-generated responses are not a substitute for medical advice. These services are not intended to
diagnose, treat, or cure any condition or disease. Always ask your doctor about specific health concerns.
Narcolepsy Support Online
Living With Narcolepsy
July 14
The sad part is my son is a nurse with adhd and he has to take Adderall to stay focused. But, he doesn’t want to understand my problems. He was a preteen when I was diagnosed and he seemed to understand then. Now, he just gets upset if I’m not up cooking or cleaning for him and my granddaughter. When I was young woman, I abused drugs and found out later that not being diagnose earlier and treated had much to do with this. I haven’t abused since, but he throws that up in my face while calling me lazy or non caring when I’m not taking my medication. When I am taking my meds, he and my granddaughter call me a methhead and a pos. I can’t win.
September 20
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