Staying quiet? Need advice on this.

Support

Hello everyone. I am posting this on a throwaway because I would like to keep my main account free of this.

I am 24 years old. I have been diagnosed with Pain-Induced Epilepsy in march of this year. This only happens if I am already unconscious, so just hitting me over the head with a pan will not trigger it. Doing it while I am out cold because I fainted during a concert however would do the trick, for example.

I have had 2 of these happen to me in my life. The first one was when I was 19. I woke up in a cold sweat because I had a biliary colic. This essentially means that my gallbladder decided to store stones and one of them passed through the bile tunnel which is a solid 9.5/10 on a pain scale. Called the ambulance, and suddenly I woke up in one. I passed out from the stress, fell onto my arm which caused it to dislocate and trigger the seizure. In the hospital we started all kinds of procedures. EEGs, MRTs, all that stuff you all know. Clean. 100%. Nothing. So they just let me go thinking it was nothing.

Fast forward to this year. Before I say this, I have to say that I suffer from occasional circulatory problems due to a surgery that was done on my stomach to lose weight. I walk around the city and notice that I was feeling unwell which was nothing new to my at this point. I walked to a McDonalds and then, suddenly, woke up again in an ambulance. "You've had a seizure, dont worry, everything is fine. Though you fell on your head and have a nasty wound." is what the paramedic told me. Apparently I passed out and fell onto the back of my head which caused the seizure. I was immediately awake, felt nothing of fatigue or the sort and reached to my bag to pull out the gastric surgery card I require to carry on me. Once I arrived at the hospital they sewed my head wound shut, did an MRT, and then I was good to go. The MRT was, once again, clean.

When it was time to have my stitches pulled my doc told me I should really hit up a hospital with a set neurological ward. I agreed and went in to another hospital that he recommended. Once again, we did everything. EEGs, MRTs, Long-time EEGs, Contrast-MRT, and all of that. All of them were clean. Not a single thing on the pictures or on the waves. At that point several days in the hospital have gone past and I was already sitting on packed bags as we just did another examination, docs come in, said that examination was clean as well but then stopped me in my tracks. "We have one last thing we would like to do, which is a sleep deprived EEG. After that you can go.". Great, I agree and wait for 24 hours and stay awake the entire time with the help of caffeine and whatnot (which the doctors said was allowed). We did the examination and a couple of hours the docs come back in and say they found sharp-waves as well as a polyspike-complex which only meant epilepsy. Fortunately, because my epilepsy is a very tame type, the dosis of meds I would have to take is basically negligible.

Needless to say I was very much distraught. I thought that life was genuinely just over because the German legal system does not have a distinction between rare and controllable epilepsy, like mine, and really bad epilepsy for people that have an uncontrolled seizure once a day or so. It's all the same type.

Ever since then I have found quite a few hurdles in life. I feel like I need to stay quiet about it, especially to have better chances at a job even if it is risky if the employer finds out. The stigma is insane. One of my friends legitimately thought for a bit that I was unable to care for myself anymore until I told him that nothing has changed.

Do you tell people about your diagnosis? What about employers? I always feel a great sense of dread when I think about it...

I have a medical check for a job coming up this Monday (dont worry, its nothing like Pilot or something) and I am considering just not telling them, even though it would technically require me to do so. What the hell do I do....

Posted Jul 25, 2026, 7:50 PM UTC

32
Loading comments…