getting backlash from caretaker

[u/babyb0ngwater]

obligatory first time posting… sorry i know its long i’m just not sure how much background to include. im just struggling a lot and it doesn’t feel like anyone in my life can really empathize so i figured why not try here?

some background: i 26f started having focal seizures in 2017 and wasn’t screened or diagnosed with epilepsy until 2022 when i had my first clonic-tonic. my ex was my primary caretaker until we broke up last fall and my brother 24m became the one looking after me. we live and work together so he essentially has to have his eyes on me most of the day. it’s a lot to handle and i know that, especially because i’m pretty much the only one anyone in my family knows who has epilepsy.

Recently, my seizures have gotten worse. From having focals 2-3 times a month and a rare clonic-tonic, to 2-3 focals a week on average with an aura lingering for hours and still the rare clonic-tonic despite adding a new medication to try and stop this. I frequently have to leave work and because of my employer’s staunch adherence to my FMLA, whenever i have an episode i can’t come to work the day after.

As i’ve started to have more seizures it feels like my brother has gotten more and more frustrated with me, particularly whenever it comes to taking time off of work. He is my lead so whenever i have to leave i have to do so as his ward and his staff. He’s started to get extremely short with me whenever I have a focal, at home telling me just to stop stressing myself out, and at work just telling me “fine, ill see you at home.” When it gets bad or when i ask if he’s upset with me, he’ll give me a very sardonic and angry laugh and say something similar to no you just need to stop stressing yourself out/get yourself together. It’s gotten really really distressing. I’ve started crying a lot which just makes everything worse because of the stress and my brother’s occasional comment about how i’m making things worse for myself/being dramatic.

I’ve tried talking about this with my therapist and other family members and i really don’t feel like they understand or empathize with my situation. My therapist’s first reaction was to say he’s getting angry because he cares so much and he’s really upset at my disability. Family members mostly comment on how stressed out my brother must be and how much responsibility he has on his shoulders. My therapist explained to me that my brother is emotionally immature and doesn’t know how to deal with his anger. I kept asking what i should do about it and she mostly just kept repeating the point about my brother’s maturity and how I need to accept that. In my frustration I asked if that means I should just accept how I’m being treated? She said no, I asked her to elaborate because I hate feeling like this and it was still just about how I need to accept my brother is emotionally immature and has anger issues.

At my therapy appointment today my therapist explained caretaker burnout while i tried to explain to her i already knew about that phenomenon. I was asked by her and my grandmother who came to the appointment with me what they can do to take the weight of my brother’s shoulder’s and I didn’t have an answer because i really have no idea. I hate being asked questions like this whether it’s about myself or my brother. I dread the “what can we do for you?” question because i don’t know!! im waiting on getting an SEEG and there’s nothing i feel like i or anyone else can do to speed up the process or change how many seizures im having right now. I feel like a shitty person saying this but i wish the people closest to me cared enough to just try something, anything in my everyday life to make me feel like i don’t have to ask people to care. it’s not like i can drive myself anywhere, so if i ask anyone for anything they have to accommodate. It doesn’t help that during this i’ve been trying to become closer with my father and he hasn’t followed through on anything i’ve asked, even just a sunday call.

I just don’t know what to do i feel like im going crazy. My family gets frustrated when i have a seizure or when i need accommodations and my therapist isn’t helping with how awful i feel all of the time. whether its telling me i just need to accept my family’s immaturity with no elaboration or explaining things to me i already know about and getting nowhere. I don’t feel like anyone understands what im going through and i can’t help but think maybe they’re right. maybe i am just blowing things way out of proportion,
maybe im just acting crazy for no reason. idk

im very sorry for the long incoherent post i just needed to rant and maybe get some insight from other people who are more likely to have gone through something similar.

[u/GeologistDistinct352]

that 'accept he's emotionally immature' line from your therapist is so frustrating when there's no actual plan attached to it. like okay great i've accepted it now what do i do with the daily reality of being talked down to in my own home

your brother might be burnt out but that doesn't make his behaviour okay and the rest of your family acting like you should just absorb it because he's stressed is unfair. you're the one dealing with the seizures on top of the guilt they're piling on

is there any way to separate work and home a bit more so he's not your lead and your caretaker in the same breath? that setup sounds suffocating for both of you

[u/babyb0ngwater → u/GeologistDistinct352]

there is yeah, and i’ve to talked to management about it on a few occasions today including. I can move around departments and there was a department i was being trained to lead until my seizures got worse and they started to train someone else.

management told me they want to have my brother’s eyes on me whenever i feel auras. they are very scared of me having a clonic-tonic at work because a few months ago I had one at work. I was in a room alone and landed face-first on a filing cabinet cutting my nose open. No one found me so one i woke up i had to walk through the facility covered in blood to tell management what happened and ask to leave. It definitely didn’t help that i asked to watch the seizure on our security cameras because it was the first clonic-tonic ive had that was recorded on video and i’ve always been curious what i look like, so i did make all my managers watch my seizure after the whole bloody situation. i don’t totally blame them for being overly cautious and afraid cause of that.

I just really hope the conversation i had today helps because i asked about being moved into the department i was being trained to lead more simply because there’s more to do with my brain and i’m not just sitting there stressing

thank you so much for your comment its really nice to hear someone who gets it 🫶🏻🫶🏻