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of everyone affected by epilepsy

caleb

I posted this at another article and thought I could put it here too.

The comment in the article said that epilepsy medication rarely effects suicide thoughts but I think that is false and people need to know that the medicine can influence their thoughts. Most of the medicine even list that as a side effect. Some of the medicine I've taken made me think about suicide all the time. Eventually I told my doctor if we don't change my prescription Im going to stop taking it and deal with the seizures as they come (maybe once a month) instead of having these thoughts every day.

I got injured in an accident (house fire) when I was 21 got severely burned and had a stroke in the hospital that led to my seizures and I'm 29 now.
When I was in that fire buried under rubble and flames I thought I could to die right now and no one could blame me. Then I thought I don't want my mother to say that she had a son but he died in a fire when he was 21, or that my brothers would say I had an older brother but he died when he was 21. And that's how I got myself out of that situation.
And how I dealt with my suicidal thoughts was I had my chance to die and I didn't want to. So I don't think I really want to die, I just want my situation to be better.

The medicine I take now hasn't gotten my seizures to stop totally but they are way less often and mostly not grandmal. The medicine was lamictal/ lamogitine and when I had a seizure the standard procedure was to increase the medicine and it made my thoughts way worse every time. I wish I told my doctor about it when I was 22 but I didn't and as it got worse I didn't tell anybody about it. I told my mom when I was 25 about them and that was a year after my medicine was changed.
I'm very embarrassed about my seizures and I don't tell people that I have epilepsy because I think they will think of me different, but the last few years I've got more open about them. I tell people at job interviews that I have it so it's out on the table right away, it's more awkward trying to pick a good time to tell people when you already have the job. And most of the jobs I had in the first few years I didn't tell anyone and then when you have a seizure in the workplace people are way more scared and more awkward next time.

Many people know someone with epilepsy and know how to react for someone with epilepsy, but if they don't know you have epilepsy they freak out way harder and they call an ambulance and when you try to say it's not necessary no one can understand you or believe you.

One time at a job I felt it coming on so I went and hid in the bathroom until someone came in and asked about the throw up and I couldnt answer really so they thought I ate something. I can't see straight and I walked into a wall in front of my co workers and then I went to my car to call someone to pick my up. I was in my car for a half hour before a coworker came and then I was able to explain my epilepsy. The next day my boss came and told me that they used to have an employee with epilepsy and the routine for him was to come and sit in my bosses office and ride it out there and there was a routine after, so I should have told them at the beginning and the result would have been better.

At another job at a factory I told them about my seizures and I was hired. So when I had my first one after 6 months a co worker drove me home. I feel them coming so I went to my manager tried to explain but just laid on the floor to have it. When I came back to work I went from operating 4 machines to being handed a scraper and scraping off welding dust off of products for 8 hours. IDK if they wanted me to quit but I did. I was upset that they knew all about the seizures and I feel them coming on but the first time I have one I was demoted in one day.

Another interview I had and told them they immediately started asking very personal questions, the one I remember the most is they asked about every medicine I take which is illegal and uncomfortable. I didn't get that job.

I used to play basketball every week at a gym for 2 years, and the first time I had one there they insisted that I get into the ambulance and I can't explain anything 5 - 30 minutes (sometimes way longer) about I don't need to go to the hospital but I did. The next time I was there I explained my epilepsy and one of the dudes has a sister with epilepsy and he apologized saying that they should have taken me home instead, but they didn't know I had epilepsy.

So opening up can help you in many situations, but many people will look at you different (maybe good way, maybe bad way) but it does feel good to open up and not hold this major information about myself secret. At the factory job the coworker who drove me home told me later that he watched his dad have a bad seizure right before he died, I'm sure he thinks of me different now seeing the same thing on me. I had one and went to the hospital and the doctor said I wasn't allowed to ride bikes anymore (fuck off doc), people think that you shouldn't do very basic activity when they know about your seizures.

So it can work in both ways how people look at you. But after my time with epilepsy I think it's better to tell people that you want to be close to about it. Be open about your suicide thoughts to people your close to, and about bad seizures, and how you let it affect your habits. Even if they don't react how you want them to it makes you feel so much better about opening up.

caleb
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