Stigma and Epilepsy (or any stigma)

@santosha
@baa
I wholeheartedly agree there are more good people than bad. I have also had very good compassionate people care for me and didn't mean to be one-sided.
I was trying to point out that inhumanity towards people still exists towards people with Epilepsy. However, many of those incidents happened in the ’60s & ‘70s when attitudes were much less accepting. I suppose I was feeling sorry for myself and remembering the hurt of some of the incidents and overlooking the good people. I want to forget all of the hurtful situations but somehow I can’t even after 57 years. I will never forget the little boy at the shopping mall. When I woke up from a seizure he was sitting next to me, talking softly with his hand on my arm. Such a special moment, but then his mother yanked him away, making a snide comment.
I wish I could remember more of the compassionate people who offered their help.
Take care kids,
Jake

Jake, I completely understand. We are, after all, only human. I think you can forgive others for being hurtful but we still remember the pain. That remembrance is what makes us more sensitive to others and try harder not to hurt them. I’m just guessing those awful experiences have made you a compassionate, caring person who treats others with genuine respect! God bless you this day! Baa

@jakedduck1 - I've seen your postings on the neuropathy group and pertaining to your posting of three days ago, I had my first seizure in 1969 and you are right....back then, it was not understood at all. Until the late 1950's many states forbid anyone with epilepsy to get married. I was stunned to find that out. We married in 1972, unfortunately, had seizure on honeymoon and my wife being in the medical field got me help fast. Been on 600 mg Dilantin daily for 51 years. But I recall even in the late 60's and 70's, people would hesitate a little when they heard the word epilepsy. Back then, the stigma was there. Many false misconceptions existed. I've had a few bumps in the road in 51 years. Today, with advanced treatments, people have a better understanding. Stay well.

Hi Jake (@jakedduck1)
I also do understand you and the point you have tried to transmit in your post. Unfortunately, stigma towards not only epilepsy but also other health issues still exists.
Beautiful words @baa you have shared with us! Epilepsy is an opportunity for us to become more passionate human beings.
I hope that all who went through similar experiences of prejudice will at some point heal those wounds. The support of a psychologist can be of much help.
I wish you all a good coming week!
Santosha

Today I encountered a man who believes a person who has a seizure can swallow their tongue. He also thought it
might be contagious by touching a seizing persons bloody saliva caused by a bitten tongue or cheek as mentioned by the neurologist in the video link below so I thought I'd post it.
https://m.youtube.com/watch?v=Gqdpmos-kxQ&pp=QAFIAQ%3D%3D
Take care everyone and thank you for your comments, compassion and encouragement.
Jake

@jakedduck1
Jake, thank you so much for sharing such an interesting presentation. It is amazing to see those beliefs alive in our Western society in the XXI century!!! But unfortunately, this is true.
Not very long ago this year, I heard from someone that my epilepsy is due to the vaccines against COVID-19 I took in 2020 and 2021. What an absurd!!! I told then this person that I was diagnosed with epilepsy in 2019, well before taking those vaccines and that he should get more knowledge on epilepsy before saying such things. What a poor education from someone who has an undergraduate degree! I was shocked!
At first, I felt bad when I sensed that a few people were distanced from me when I told them about my epilepsy. Nowadays, I am the one who does not want to have those people in my life. I am no longer ashamed of my condition, but I had to work it out with my neuropsychologist. Do not let stigma affect you!!!
Have all a good week!
Chris (@santosha)

Like your reply. Some people do not belong in our life. I have an affirmation about that. If I cut you out of my life you most likely gave me the scissors.There is also something called the Proximity map where determination are made about who stays in our life and how close. My husband and I own an RV and at the end of March right before we moved the campground host told me the apocalypse was coming on the eclipse in April then proceeded to inform me about repentance how to worship God etc. I do not want to offend anyone's religious beliefs but I was scared by her forwardness and lack of boundaries.Extrememotional distress is a seizure precipitation. We moved her predictions did not occur and I cut off contact. I thought before this I had a friend.

Hi @mdk1960
I loved your sentence: "If I cut you out of my life you most likely gave me the scissors." Very well said, I will keep it.
As I stated in my positive impressions of my epilepsy experience, through my condition, I got to know who were my true friends. Have I lost relationships because of my epilepsy? Before I would say "Yes", but today I say "No". Those relationships were in fact fake ones, based on interests mainly. I have not lost them, because I could see they were not worth keeping. In terms of relationships, I see today how much I gained. Besides knowing who were my true friends, my epilepsy has created opportunities to meet marvelous other people through epilepsy groups, like here at Mayo Clinic Connect.
Have all a lovely evening!
Chris (@santosha)

@jakeduck1
Hey Leonard, I don’t remember reading this post before (pardon me if I have responded before. Old lady losing memory!) All I can say is that Jesus would run toward you, wrap His arms around you and love on you. I feel that way. I would give you the biggest hug because I see you as a hero. After all the trials you have endured, you are an inspiration to others, and what greater purpose in this life could we have? There will always be humans who are mis-guided, who have hardened hearts, and I am sad for them. But you are an angel!! I love your posts my friend!!

@baa
Thank you so much. What a sweet thing to say.
Blessings,
Jake