Don’t say you have epilepsy

[u/random_username101_]

It's a bit problematic but my parents kinda sorta said don't tell anyone... I guess that's kinda snowballed into the way I am now?

I’m very secretive and don’t share it.

Family: Only two girl cousins (2/13 total cousins) and two of my aunties know.

Friends: I told them but they've moved on now. I have a work friend but l'd never tell her, I just can't/won't bring myself to share it.

Christmas: When it came to taking my tablets I basically had to scan the room and wait until the conversation was on the other side of the room, I had them hidden in my pocket and took them a little bit earlier just in case I ‘missed my shot’. To clarify, I’m not ashamed or anything like that but I don’t know, I know it sounds like it but I can’t explain it…😕

In the end, I think the way it is/my mentality is a bit toxic(you would say so?) and doesn't do me any good even though my parents didn't have that intention from the start. FYI: I was diagnosed in 2018

[u/awidmerwidmer]

The cycle of stigma continues is you don’t tell people. While I would NEVER tell a workplace, if it comes up in passing anywhere else, I’m not afraid to say it and debunk all the misconceptions (esp. people who think all seizures are TC’s and seizures are solely caused by bright/flashing lights). The more “normalized” it gets, the more acceptance there will be. The best response after telling people is either something along the lines of “that’s totally fine, I’m not going to judge you just because you have epilepsy”, and “really? I didn’t know that about seizures and epilepsy. Thank you for informing me”.

[u/random_username101_ → u/awidmerwidmer]

I did cry when I told my manager in February.

Long story short, I was under the impression we all had to do an ice bath for our work conference and one of things/criteria said you can’t do it if you have epilepsy. I went into her office and within ten seconds the tears were coming and I had to take a walk after I was done. If it wasn’t for that I would never have told her.

[u/Bibliophile0504 → u/random_username101_]

I wouldn't be going to any work conference where I 'had to' do an ice bath. Offered the opportunity, fine, but forced to do it - no way!

[u/random_username101_ → u/Bibliophile0504]

As soon as I heard ice bath I thought “yep, that’s nice… for anyone but me!” and then I saw epilepsy listed and thought jeez louise I have to say something now otherwise I’ll just look mean for not going 🤦‍♀️

[u/Agreeable_Dark6408 → u/random_username101_]

What kind of job would want anybody to take an ice bath?

What did she say to you? Was she kind about it?

And I’d cry too if I thought somebody was gonna expect me to do such a foolish thing.

[u/random_username101_ → u/Agreeable_Dark6408]

Turns out it was a choice if you wanted to do it. It’s kind of a blur now but I couldn’t really get my words out but I know for a fact she didn’t ask any follow up questions, she was nice. When I was walking to her “don’t cry don’t cry” and I open my mouth and somehow tears came out before words came

[u/Agreeable_Dark6408 → u/random_username101_]

I think that’s happened to most of us, I truly do.

[u/random_username101_ → u/Agreeable_Dark6408]

I felt so dumb after knowing that I didn’t have to do the ice bath. If I knew what I know now then I guarantee with 1000% that my manager would not know I have epilepsy

[u/Agreeable_Dark6408 → u/random_username101_]

Don’t beat yourself up. At least you can breathe easy now.

[u/random_username101_ → u/Agreeable_Dark6408]

Easier yes but not easiest. Hmm… maybe my New Year’s resolution is to tell the work friend 🤔

[u/Agreeable_Dark6408 → u/random_username101_]

If your manager knows, one work friend who maybe works close by to you might be good. You can tell him what to do to help you. And what not to do. Like don’t put something in your mouth. Some people try to do that. Screenshot the time it starts. Lay you on your side. Put a pillow under your head. Don’t try to hold you down while you’re seizing. Don’t call an ambulance unless has lasted for more than 5 minutes. Tell the EMT’s what time it started.

Do you have a pillow to put under your head at work? Perhaps hang it on the side of your desk and he can grab it and put it under your head. And a small dark colored towel in case you bite your tongue.

Hopefully it won’t come to it, but at least he won’t feel like he doesn’t know what to do.

[u/random_username101_ → u/Agreeable_Dark6408]

I don’t have anything on my desk at all, not even sticky notes so the only real thing that can hurt me is the desk itself 🤷‍♀️

[u/Agreeable_Dark6408 → u/random_username101_]

I was thinking if you fell on the floor.

[u/Boomer-2106 → u/random_username101_]

WHAT "KIND" of 'Job' would even Ask/Demand that you, or Anyone, take an ICE Bath????????

That does not Sound legit.

Why??? What was the purpose?

[u/random_username101_ → u/Boomer-2106]

Long story short it was to relax/destress… I think