Stigma and Epilepsy (or any stigma)

I am impressed with your resiliency, @lsittll. Since your mother never stood up for herself you had a lot of work to do to change that way of thinking. It took some courage to stand up for yourself. It also took a lot of introspection to change the way you live your life. It has served you well. Congratulations!!

Thank you so much @hopeful33250. I have sort of learned the "hard way." I have told my mother to stand up for herself so many times and she has lost out on SO much.

I understand what you are saying, @lsittll. The process of unlearning what we observed growing up can be a bit of a task, to say the least!

@hopeful33250
I finished A Mind Unraveled. He probably could’ve cut out 100 pages because I felt a lot of what he said was superfluous. I wish he would’ve stuck more to the facts of his epilepsy. I didn’t think he excepted responsibility for his epilepsy. He just made things more difficult for himself and others.
In my opinion. There are definitely pros and cons being completely honest with people but if I remember correctly he never had any problems with any of his friends rejecting him, just at work.
Take care,
Jake

I wrote this on another E forum. Someone asked a question “What should be talked about more regarding Epilepsy”
I believe ignorance and stigma.

Excellent question wish I had an excellent answer. I agree with the other members. All had good suggestions.
One of the things that upset me the most is the stigma of epilepsy and how much damage and hurt it can do to us.
My first experience was when I was 18 years old (52 years ago). My dad was paralyzed from the neck down by a drunk driver and eventually transfer to Phoenix Arizona. I tried to get a job there and the woman who interviewed me saw that I had epilepsy on the application. She tore my application up, threw it in the garbage and said to me, “we don’t hire cripples.” My friends excepted me just fine but some of their parents didn’t. They forbid their being around me. I was told you belong in a circus. People afraid to get near refusing to help you and allowing you to beat your head against whatever, In my case it is was the bottom stair of the marble staircase I fell down in a mall. Being falsely accused of being mentally ill, drunk, or on drugs, epilepsy is catching. You’re the devil you’re possessed. I thought they locked you people up. The list goes on and on and on and the comments, hate, and discrimination hurt and it's hard to forget.
It wasn’t until Missouri repealed the law in 1980 when people with Epilepsy were free to marry in all 50 states.Even some doctors are ignorant. How many have never been told about Status Epilepticus, S.U.D.E.P. (Sudden Unexpected Death in Epilepsy. I wonder how many people especially children could have been saved if doctors had suggested the possibility of these conditions and recommended antisufication pillows, bed alarms or to sleep with the child. Were you ever told about safety precautions by a doctor or nurse?
When will the ignorance stop.
At least we are not being burned at the stake any longer.
@santosha, are there any particular attitudes or myths that persist in Brazil?
Jake

Good morning Jake! Sorry to hear of the ignorance and hatred that others shown on you. I didn’t realize this was going on in society. Unfortunately, there is no cure for hatred. Hang in there, I got your back!

Hi Jake, Good Morning (@jakedduck1)
What terrible experiences, I am very sorry you had to go through that in your journey. I do really hope that these wounds are healed with no or little scars left.
For sure, there is still discrimination over here regarding epilepsy :-(. Brazil, just like the US, is a huge country with great differences in culture depending on the region. The more North you go, the more conservative it gets. São Paulo city (in the Southeast), where I live, I understand that it is what New York City stands for in the United States, with many immigrants and great influence of different cultures (German, Japanese, Italian, Portuguese, Lebanese & Syrian). As we say over here, there are many countries inside a country named Brazil due to the differences in culture and attitudes.
I, fortunately, have not experienced such attitudes myself here in São Paulo region. Please remember that my experience of knowing that I have epilepsy is much more recent than yours. As you know, I got diagnosed with epilepsy in early 2019, though I have had it since I was a teenager (I am 52 years old now). But at that time, my seizures were rare (3 times a year) and very mild (I could recover very quickly from my partial complex seizures). I had a normal life, went to university, had a career in the corporate world, etc. But at the end of 2017 after a burnout, my epilepsy has evolved and started to show its face. At that time I was working as an independent career coach with my own office. In 2020, I had to stop work due to my condition with the AEDs treatment.
Somehow, Covid has protected me at that time, when I got very angry about this diagnosis and had a hard time dealing with it. First, I just told about my condition to my very close friends, being hugged by them. It was just after accepting my epilepsy and the new life that came with it, that I had the courage to open up about my condition to more people with whom I have a frequent contact (not necessarily a close one), such as my colleagues and teachers in yoga, my colleagues and teacher in Pilates, some ex-coachees and ex-colleagues, my hairdresser, the janitor of the building I live in, taxi drivers and others. I have done it with caution and slowly. The great majority had a positive attitude. There was a person whom I felt got distanced from me after I have opened up my condition to him, which I accepted. I did not get hurt by it. I do not want to maintain contact with people who do not accept me the way I am.
The worst attitude I have experienced came from a neurologist, who treated me like a limited person. All of a sudden, many things I was used to doing by myself he asked me to stop, such as walking by myself, not entering a swimming pool, and other things, putting much fear into me. There are many types of epilepsy as many of you already know. He has imprisoned me, but thankfully this is over. I have found an epileptologist who treats me with much respect. Unfortunately, I have experienced many unprepared doctors for treating epilepsy in my journey. I do very much agree with you @jakedduck1 about some doctors.
I have never had the experience of telling a potential or current employer that I have epilepsy. At the time I worked for companies, I did not know I had epilepsy. As an ex-career coach, if one of my coachees had a special medical condition like epilepsy, I would not recommend opening it in the first interviews right away. The selective process is a selling process from both sides, from the candidate part as well as from the company's. You have first to courtship the people involved in the selective process and enchant them. One of my coachees in outplacement asked me if he should hide he was a homosexual in interviews of selective processes. As there was more prejudice at that time over here, I have recommended to not show it in his interviews with headhunters, HR or other people with whom he would not work directly if he would be the chosen candidate and accepted the offer. However, I told him not to hide it in the interview with the potential boss/direct report. And then I have asked him "Would you like to work with someone who does not respect your homosexuality, having to hide it all the time"? The answer was NO.
Today, I have learned that Elton John has epilepsy. What an honor!!!
Have a great evening!
Santosha

Jake, It is very hard to think of someone being treated so badly. Maybe because my epilepsy is nocturnal and people don’t see my seizures that I haven’t experienced this ignorance. Or being so mean I should clarify. I live in a small city of around 68,000, and the population is about 50% African-American and 50% White. We are progressing in a positive direction and people are more kind and accepting than I expected when I moved here. As a 72 yr old I am familiar with older folks being treated disrespectfully and dismissed. However, I have been treated so kindly here. Not what I expected, whether by doctors, salespersons, grocery stores, just everywhere. (Maybe I’m not old enough yet!). Jake, just remember there are more good people out there than mean ones, and God bless you and protect you.

Hi @baa
Very happy to hear that you have been treated so respectfully and kindly. I agree with you and also believe that there are more good people out there than mean ones!
Santosha

Hi Jake, Good Evening (@jakedduck1)
Reading again your last post, I now remember some more people that have walked away (distanced themselves from me) after I have opened up about my condition. One of them was a really close person (like a family member). As I mentioned in the Post "Positive Experiences through Epilepsy" my memory is not the same anymore. The positive side of it is that I forget those negative experiences more easily nowadays :-).
As Dalai Lama mentions in the "Book of Contentment" when someone has an inadequate attitude " How sad that this person is out of control or has such negative feelings. Instead of frustration and anger, you feel sorry for the other person and worry about them".
At first, I felt frustrated by the attitude of this very close person that was like a family member to me when I revealed my epilepsy. I discovered that this person was not the one I had imagined she was. But nowadays, I feel more sorry for her than anything else.
I might have lost some people in my relationship, but I have met other marvelous ones through my epilepsy experience.
Santosha