u/doesena

I'm gonna cut to it this last Ramadan I was in the psych ward and basically all I had was the clothes on my back and a Quran Alhamdulillah.

During my stay the Quran was beautiful and a beacon of hope and it made me feel better. I was sent multiple times to the hospital during my stay because my seizures get bad and when I was in the hospital I would play the Quran to calm me down and it worked.

Fast forward to now, I can barely read or listen to the Quran because I feel like I'm back in those places and it makes me freak out. Like I had the worst experience in my life in the psych ward and what was once hopeful and my only escape is now something I actively avoid.

I'm embarrassed to say this but even praying all I can think about is when I prayed there with a hospital bed sheet so I've been slacking in praying but I don't want that to be an excuse. Like I don't know how to explain it but it's a photographic memory of me praying there. Nothing bad happened while I prayed but still I can't get it out of my head.

I don't know what to do or why this has happened, I'm guessing it might be some form of PTSD but I don't like to just call things PTSD so I don't know.

I've tried to explain it to some Muslims I know and everything boils down to being possessed by jinn or having a hard heart or the evil eye and I’m not sure how I’m supposed to get rid of it if I get freaked out by listening to the Quran??

I’m posting this here because I’m Sufi and want a Sufi perspective on what to do because dhikr isn’t enough and I feel horrific for feeling this way.

prefacing this by saying I know it’s not supposed to be embarrassing but I can’t help what I feel sometimes.

I was at a new college orientation since I was transferring and I was talking to a girl I had just met there and we somehow got on to the topic of pcos then it went to our health problems and I said,

“yeah I have seizures sometimes.”

“Oh you have epilepsy?”

And I remember just being embarrassed and agreed. I didn’t want to say PNES or NES because I didn’t want to go into it because I’m always worried I will be judged.

This is not the first or fifth time I’ve done this. I know it’s the right thing to say I have non epileptic seizures but when they have questions afterwards I kind of shut down and feel dumb.

I feel horrible I keep doing this because it will come to hurt me one day I bet with the confusion of what I actually have but I can’t seem to stop.

About last February I went to the psych ward after my mood stabilizer was taken off, I had no previous SI ever but it got so bad I had to be admitted.

It was the worst experience in my life. I started seizing again and they just watched me. Like I mean I would fall on the floor and be seizing and they would stare at me hard. The whole psych ward experience was just bad in general but one of the nurses talked about how they had an old lady who used to fake seizures to not go to the cafeteria and it made me feel weird.

Like why bring that up to me?

I remember I was in there during Ramadan and I told them that I wasn’t eating and couldn’t take my meds (just an anxiety med) while the sun was up because I didn’t want to break my fast and they told me if I was refusing food that would be considered suicidal behavior and I would have to stay longer.

I know technically I was excused from fasting but it was the only normal thing I could cling on to in that place. I literally had to fight to be able to keep my hijab 😭

After I had a bad seizure and fell and hit my neck really hard they didn’t call EMS for 40 minutes and I was just sitting there sobbing my eyes out and they ignored me

I got told I was faking it by two different doctors because I wanted to leave the place and I just sat there and nodded because atp I just wanted to leave.

I went in there 6 months seizure free and came out seizing daily.

I hate having to teach them what it is because I feel silly and I know it’s wrong but in the back of my mind I’m like ‘you’re a therapist, did they not teach you this??’

I have to remind myself as an EMT that I had no clue what a non epileptic seizure was and used to think it was a pseudo seizure and people were actively faking because we didn’t learn what PNES is.

But still even that’s annoying because it’s like no one is actively teaching people who interact with PNES patients what PNES is.

Do you pray over it? Has prayer helped you with seizures? Have you ever gotten angry at God (or whatever you believe in) over having seizures?

I’m Muslim and I have a hard time with my faith because of my seizures. Like I haven’t been to a mosque in so long because I’m worried about having a seizure there and everyone tells me to just stay home.

When I try to explain my disorder to people I always say ‘I have seizures’ ‘seizure disorder’ or very rarely “non epileptic seizures” I will never name that I have PNES. I hate the “psychogenic” in the name.

When people ask if I have epilepsy I don’t deny it and I know I’ve made a post here in the past saying I wish I had epilepsy over PNES and this is the main reason why for me. Not because I understand it but because others don’t.

Even if people understand and know it’s not voluntary I’m still embarrassed over it. I don’t know how to describe the feeling like when you’re explaining something that even you don’t believe.

Living it, knowing it’s not voluntary, but still there’s always this thing in the back of my mind saying it is and if I just put my mind to it I’d stopped having them.

I make food at home all the time and I could eat a days worth of food from home and not feel filled. Genuinely good portioned healthy meals with tons of protein and I know it tastes good and everything but after I immediately want to go out to eat because it doesn’t fill me up.

I don’t understand why eating out immediately fills me up no matter what it is but amazing home cooked meals make me feel hollow. I’ve gained so much weight from this and it’s been bad lately.

“If you can think about x you’re faking” or “move this arm a little bit - you have control you’re faking” I keep doing this and I’m not sure why and it is really beating me up.

I genuinely for a second thought I was faking it or it was under conscious control. I have to remind myself I would never do this on purpose and today was my first seizure in a month or two and it wasn’t that bad just some stiffening of my right side and back arching momentarily for about 30-40 seconds before I knocked out but during my seizure I remember going:

“Think about niche Instagram aesthetic”

and I did and was distressed by the fact I could do this mid seizure because it makes me feel like it’s under conscious control.

During the daytime I am so sick and auras constantly but the second it turns night it’s like I’m a normal person with no issues.

No matter the stimulation either, I had a wedding today and all day I was extremely sick and genuinely had to lay down outside but the second it turned night it’s like a switch flipped and I was dancing and playing around

I’m a psych student who had to be put inpatient this year because of a bad reaction to keppra that gave me suicidal thoughts I had never had before and I’m worried this has messed up my entire career plan, it’s been stressing me out. (I was technically/legally voluntary)

Also does it matter whether you’re voluntary or involuntary in this regard?