NAVIGATING SOCIAL STIGMA AROUND EPILEPSY

[ehinOWHEN]

People have no idea how living with a chronic condition like epilepsy often comes with more than just the physical challenges, it also brings a level of social stigma and misunderstanding that can be hard to navigate.
For me, avoiding social situations has almost become second nature. I’ve noticed myself trying to “blend in” as much as possible, like waiting until it’s dark to go out and get food, so I’m less visible to others. Even then, I often pretend to be busy on my phone just to avoid unwanted attention or uncomfortable interactions and even to make eye contact.
Things were especially tough a few weeks after I left the church and went through a really difficult time with my family. The stigma felt unbearable then, and I constantly felt the weight of judgment from people around me. It impacted my self-esteem deeply.

Thankfully, I’ve started to notice small improvements in my confidence over time, even though it’s still a work in progress. I’m curious, how do you deal with these kinds of situations? Have you found any strategies or mindsets that help you handle moments when others don’t understand your condition or make you feel judged?

I’d love to hear your thoughts and experiences. Let’s learn from each other!

Warm regards,
Owhen

 

[Sabbo]

As I've mentioned before, I often seem to feel more stress/tension in family gatherings or other large functions where my mother is present. In those situations, she literally treats me like a toddler, though my older son completed his engineering degree 2 years ago, & my younger son just started college! Even my husband notes her attitude towards/with me. What's especially annoying is that she's never acted the same way with my sister who is 3 years younger than me. I often wonder what gets into her--when it's just the 2 of us, she's fine and rarely causes stress.

This is one major reason I do not want her around when I have my friends over. Another is that she tries to overtake the plans/redo things according to what SHE wants/likes any time I plan a function in my house, with family or my friends.

I've learned to "ignore" or simply hide many of my emotions. I was bullied a lot in sixth through ninth grades. That was when people told kids "Just ignore it--after a while they'll leave you alone". How untrue! They never realized that words are MORE painful that physical injuries.

 

[Porkette]

Hi OWHEN,

Since I was a kid I never felt like I fit in with the rest of my family and that I wasn't good enough for them.
My parents complained to me about the cost of my AED's but they had ins. to cover everything. Finally by
8th grade I went to a boarding school and it was there I learned to realize just because I had epilepsy I was
no different than anyone else and either my family had to accept my epilepsy or they could forget I was
living. As time went by my mom was the biggest pain. My grandparents lived right next door to us and
she was always telling me "Call me when you get into your grandparents' house." but all she had to do is
look out the window and she could see me walk into my grandparents house. After I grew up and went
out on my own my parent were mad at me because they saw how I did it on my own along with getting
married and that's when my parents and my brother broke it off with me and it's been over 20 yrs. since
I've been with them. They told me I was nothing but I quitter because of my epilepsy but I proved them wrong.

 

[Sabbo]

I also feel like I didn't get the support I needed when completing my education--another thing I have mentioned before. After I went to the University of IL-Chicago for one year, I decided to attend the junior college a mile from my house. (It was their last year using a trimester system & commuting became too hard). At the junior college, the counselor kept pushing me to take advanced accounting classes, which I did very well in, but didn't tell me that they weren't transferrable. Had the counselor told me, after taking one or two advanced classes I'd have transferred and tried to get into their accounting program. Unfortunately, when I transferred, I had so many credits that I had to immediately declare a major.