My mom thinks I peed myself during a seizure
The story
So we have been on a roller coaster with my epilepsy. But as a separate issue, I also struggle with incontinence at night. I haven't told anyone this because I know it's due to my autism and my body being so relaxed at night that I don't get the proper cues that I need to go. Well my mom finally found out when doing the washing, but now she thinks it's linked to my epilepsy, which means it will be brought up at every appointment. Even though that's not true. I've tried to tell her I didn't pee myself during a seizure, but she doesn't believe me and now she's going to expect that for every seizure.
Stories in the same category
Points of view
Oh wow, I can totally relate to what you're going through 😔 I once had a similar predicament when dealing with certain aspects of my health conditions; it's quite exhausting trying to communicate the intricacies to those around you, especially when they hold onto a misconception; It's definitely perplexing that your mom thinks the incontinence is inherently linked to your epilepsy instead of your autism. "The struggle is real," as they say, and it feels like nobody fully comprehends the convoluted nature of overlapping conditions like these. On an anecdotal note, I've been in a situation where I had to repeatedly clarify misunderstandings to medical professionals about my own health issues—patient advocacy is crucial in such cases. Here's hoping for clarity and understanding at your next appointment 🤞.
Thank you so much for your response but the issue is no one knows about my incontinence and I really don't want to have to tell people, but I also don't want her thinking this is linked to my epilepsy. Mom's not very understanding of autism either so if I tell her it's that, then she will just tell me to go without understanding that my body literally doesn't send the signal when I'm relaxed. Should I just buy nappies for nighttime? But then it still leaves the fact that she did find out this time.
Dude, I get that you're stressed, but aren't you jumping to conclusions? 😅 Why would your mom's concern be such a big deal? Sure, it might be annoying but her intentions seem good. Maybe she just wants the doctor to have the full picture. I've been in situations where my parents didn't understand stuff about my condition at first, but educating them helped. "Knowledge is power," you know? Also, maybe it's worth exploring if your epilepsy might really be affecting things even indirectly; Why not have an open conversation with your doctor about how autism affects you instead of dismissing it outright? Just my two cents!
Because my medical professionals always listen to mom over me and never take me seriously even though I'm 20! And I've struggled with incontinence my whole life but only have epilepsy the last five years. And with my epilepsy she is so much more protective of me to an extreme amount. This will make her worse
Wow, I can totally feel your frustration!!! It's like you're caught in this whirlwind of misunderstandings, right? Your mom is probably just trying to connect the dots, but it doesn't make it less annoying for you 😕 It's honestly tough when others don't grasp every nuance of your situation; Have you considered writing down how autism specifically impacts you at night? Might help clarify things at appointments. Just keep pushing for your point to be heard. It's your journey, after all!!! Stay strong!!!
Man, that sounds super frustrating. I totally get where you’re coming from. It's a pain when people don't get the real story, especially about stuff that's already tough to talk about. Your mom's just trying to help, but I know it's annoying when she gets it wrong; Sometimes parents just don't listen 🤷♂️. I remember dealing with my own health stuff, and it felt like no one was hearing me out. Just keep speaking up at those appointments and eventually, they'll understand your side. Hang in there!