feeling alone
tldr
I'm having a hard time and don't have a lot of emotional support and it's wrecking me, if anyone is open to being a support buddy or if you know of any discords or peer support groups pls lmk.
I would especially love to have trans friends/groups with seizures/epilepsy.
story below, I'd love it if you also read & responded to that but no pressure
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I've been having a lot of seizures for the last few weeks. Multiple times a day every day.
Long story short I've had them since childhood but never got diagnosed. I've been invalidated a lot and have genuinely just thought I was being dramatic this whole time and am finally accepting that they're seizures, I can't just make them stop, and it's not my fault.
(My PCP believes most of them are focal impaired awareness seizures, but I have had tonic clonic seizures before. I have a neurologist appointment but it's not until August. He prescribed me gabapentin and it helps but makes me so sleepy I can't stay awake so I can't take it a lot.)
I've had some scary experiences. Today I had one in a public bathroom on the floor. It was not great. I came home and had more seizures. One of them was also kinda scary. I'm not really sure what happened.
I've also been seen during/after seizures a couple times, including today. I've had a lot of abuse during/after seizures in the past so being perceived during that is genuinely terrifying for me.
I tend to isolate really bad during times like this and I'm trying not to do that. I desperately want support. I need support.
My two close friends aren't super available for support right now. I've tried to talk to other people about it but that's hard. So I'm feeling very alone in this. And kind of scared. And accepting it as something real, as seizures, and not just me being dramatic or needing to calm down is... hard.
I'm already chronically ill, I struggle with mental health stuff, this has been going on for a long time; I'm not new to the knowledge or reality that I have limitations. It changes some things about the present and future but not a ton honestky. If anything it makes me feel like the limitations I know I have and the accommodations I know I need are real. But idk. There's something about realizing I have seizures and probably have epilepsy that makes me... scared. And angry. And sad. I feel grief.
And it's partly for the present/future but the anger and grief is around not having been diagnosed and gotten proper medical care years and years ago. Everything in my life could have potentially been so different with proper care.
I'm really sad that my friends aren't available and I'm upset, which feels stupid because they're both going through things and genuinely haven't had the capacity. I don't blame them for it. But I'm still having feelings about it.
I know I need more community. I've reached out to some people through local groups and am going to try to make more friends locally (I moved here like 6 months ago and have only made a few friends so far). But it's really hard. I have veey low energy right now. And I don't want anybody to see me having a seizure. I want to get over that.
I'm more upset about not having support than what is actually going on, which seems silly to me? Like, I can deal with the practical issues. For example, not being able to drive is upsetting and really difficult in my area but I can figure it out. But I'm having really big feelings and no one is there to be in it with me right now. I feel alone. And I hate it.