Hi,
BACKGROUND
I have FND, PNES(psychogenic non epileptic seizures), autism, depression, anxiety, and dyslexia. I'm around 14 and have around 4-5 seizures every day. In March/April I was in a wheelchair before I lost my memory and was hospitalized for over a month. My older sibling just got diagnosed with EDS and gets to use forearm crutches and plays wheelchair basketball.
Actual question
At this point my parents won't let me use anything related to a mobility aid. I can't use a elevator pass, forearm crutches, a walker, or a wheelchair no matter how many times I ask. They would be very helpful and would highly increase my quality of life. Also, every time I tell them about any pain or new symptoms they dismiss me, telling me I'm making it up, lazy, it's all in my head, or just anxiety. Does anyone else have to deal with anything like this or have any suggestions?
Hi Maggie. I'm not diagnosed with FND (yet) but I have PNES, autism, depression and anxiety too. I know exactly how it feels! You're going through so much, and it must feel incredibly frustrating to not feel heard or supported in the way you need. I can only imagine how exhausting it is to deal with daily seizures and other symptoms, while also feeling like your pain and experiences aren't being taken seriously.
It's tough when the people you rely on, especially family, don’t fully understand what you're going through or dismiss your need for help. Your desire for mobility aids makes complete sense—it’s not about laziness at all. You’re just looking for tools that will make it easier for you to get through the day without so much pain or exhaustion, and there's nothing wrong with that. If anything, it shows you're being really proactive about taking care of yourself, which is so important.
I wonder if your parents are maybe having a hard time accepting your need for mobility aids because they don’t fully understand the impact of your conditions or because they’re struggling to accept that you're dealing with all of this. Sometimes people react with denial or even fear when they don't know how to handle something serious, and unfortunately, that can come across as dismissiveness. It doesn’t make it okay, but it could explain why they’re not responding the way you need them to.
Here are a few things you could try, though I know none of them are magic fixes:
Sometimes hearing from a doctor, therapist, or specialist can carry more weight with parents than hearing it from their kid. If you’re comfortable, try talking to a doctor or therapist about how these mobility aids would improve your quality of life. Ask them to have a conversation with your parents or write a recommendation for you. It might be harder for your parents to ignore if it’s coming from a professional who’s explaining the medical need for it.
Sometimes it helps to put things into words, especially when it’s hard to be heard. Maybe you could write down your symptoms, how often they occur, and how they impact your day. Keep a journal of your seizures, pain, and when you feel most limited. You could show this to your parents to help them understand that this is a real and ongoing issue, not something that’s “in your head.”
If possible, having someone like a counselor, school nurse, or trusted adult who can help advocate for you might take some of the pressure off. They could talk to your parents on your behalf or at least be there with you to help make your case for mobility aids and other accommodations like an elevator pass.
Sometimes, parents hear “wheelchair” or “crutches” and immediately think of something negative, like they don’t want you to feel "sick" or "disabled." Maybe reframing it to emphasise how much better you’ll feel or how much more energy you’ll have could help them see it from a different perspective. Like, “I’ll be able to do more if I’m not so tired from walking,” or “I want to use this so I can get around more safely and not have to worry about my seizures.”
I know this situation must feel incredibly isolating, especially with all you’re dealing with at such a young age. But your pain is real, and your experiences are valid, even if your parents aren’t acknowledging it. If things continue to feel stuck, it might be worth revisiting with a healthcare provider who can help advocate for you long-term.
You deserve to feel supported and safe. Keep reaching out to people who will listen and help guide you through this—you don’t have to navigate it all alone!