Blog · Dealing with epilepsy · Way too personal

Is it fear or lack of respect that you see the most?

I was speaking with one of those Facebook friends that you never met the other way. She also has a very specific disorder, although not epilepsy, but close to the spectrum.

When asking what she hates the most about her condition, she said “the way the others perceive her”. Thinking about epilepsy, how do friends and acquintances see you and what do you hate about it? I saw in the eyes of people that know about my epilepsy many things, but two stick out:

  1. Fear – people fear that you’ll have a seizure anytime, anywhere. But the fear is not that you’ll get hurt, but that they won’t be able to handle what is happening.
  2. Lack of respect – there are many myths about epilepsy (see my past articles) and many people believe them. Many people think that we are all photosensitive, or that we inherited it, or that we have a smaller IQ because of it. The last one is the one I saw many times, regardless of saying to people that Caesar, Dostoyevski, Agatha Christie, Alfred Nobel, Van Gogh and Theodore Rosevelt (among many others) had it.
Blog · Dealing with epilepsy · Way too personal

Navigating love with epilepsy: challenges faced when dating

Dating can be an exhilarating journey filled with anticipation, butterflies, and the hope of finding a lasting connection. However, for individuals living with epilepsy, the experience of dating can come with unique challenges and uncertainties. In this blog post, we will explore the problems that people with epilepsy often encounter while dating and offer some insights on how to address them.

  1. The Fear of Disclosure: One of the most significant challenges faced by individuals with epilepsy when dating is deciding when and how to disclose their condition. Fear of stigma, misconceptions, and rejection often complicate this process. Some individuals may worry that their potential partners will view their epilepsy as a burden or a barrier to a healthy relationship. Striking the right balance between openness and personal privacy can be a delicate task.

Suggestion: It’s important to remember that epilepsy is a medical condition and not a reflection of one’s character or worth. When considering disclosing your epilepsy, choose a comfortable and appropriate time to have an open conversation. Education and dispelling common misconceptions about epilepsy can help alleviate fears and foster understanding.

Continue reading “Navigating love with epilepsy: challenges faced when dating”
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Cluster seizures and what they can do to you

Doctors define cluster seizures as having two or more seizures within 24 hours.

Well, on December 28th, I had 5 seizures in about 5-6 hours, with the last one being on a stretcher when the ambulance came to pick me up after the first ones. From my perspective, it wasn’t extraordinary. I finally realized what focal seizures are (I had 2 in bed and came back from them in seconds), but, as any idiot would do, after a while, I wanted to take a shower, so I fell in the bathroom, hitting the floor and leaving a lot of blood there.

But at least I got to spend New Year’s Eve in the hospital :)). Not that that is a good thing. In those 10 days there (December 28th to January 6th), I lost a lot of blood, but only to lab testing, and, for the first time ever, I had a seizure while doing an EEG. It was the first time seizure activity was seen -> just a focal seizure of 2-3 seconds, but still.

But things could only get better, people would say, especially if your treatment is adapted. Remember those lab tests?!? It seems my kidneys wanted to join in on the fun: renal artery stenosis – the official diagnosis of what a nephrologist found.

Yey …. but everything is getting better and will be better. A new year, a new day, all work and play.

Blog · Dealing with epilepsy · Way too personal

Back or not?

A friend suggested that I should restart writing here a few minutes ago. I have been thinking about it for a while, but I’ve been busy (another word for lazy in this context).

But here it goes … new article coming up soon.

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What I am missing on: the dating life of a person with epilepsy

It’s been over a year since I posted last.

In the past year, I started a new (part-time) job, still working on the old one (so working 170% of a “normal” person’s time) and trying to get a personal life. This seems overwhelming from where I stand and invisible for those outside.

My dating/personal life: so I’ve been trying Tinder and Bumble for a while, but quit it mid-2021 because, well, they both suck. Had a few dates, met some interesting people, but didn’t connect with anyone.

My dating/work life: well, paying rent and eating is expensive, apparently, and you actually have to have money. So, as I said, 170% of the time. Financially, it is worth it and … I actually get to eat.

My personal life: gaining some “quarantine” weight seems to have been normal last year. For me, it seems that it was normal also. Unfortunately, for me, it meant about 20+ kilos of quarantine weight. I need to drop those before I feel comfortable starting dating.

What’s your secret in dealing with dating?