New to the Forum and need advice pls.

[Maisie]

Hi. I'm Maisie and was diagnosed with Adolescent Epilepsy at age 16. I out grew it between the ages of 22-23. I am now 67 and haven't had a seizure since. I have so much empathy for those who suffer from this disease.

I am asking for advice on proper etiquette when addressing this topic. Is it proper to call someone an "Epileptic"? My doctor called me this the other day and I confess it deeply upset me. Not because I no longer suffer seizures - but the tone of the label. I found it insulting. How does one properlyand respectfully refer to someone with this disease? I'm searching for a compassionate way to address this serious illness.

By the way, the doctor (a psychiatrist) never heard of Adolescent Epilepsy and refused to take me as a client. I truly thought we had outgrown such discrimination. When I was diagnosed in high school, they closed the school for 3 days to "sanitize" the classrooms and buildings. They feared contamination.

That was then. Now that we have so much new information (and need much more to offer viable solutions if not elimination of epilepsy) - what do you recommend to openly discuss epilepsy and at the same time engender the respect and compassion to those who have this disease?

Thank you in advance for your wisdom and bringing me up-to-date. The last thing I want to do is inadvertently offend or hurt someone's feelings.

All the best,
Maisie

 

[Fedup]

Maisie

From my point of view and I can be very wrong. The correct etiquette for addressing somebody is the same as asking how do you define someone with epilepsy. Epilepsy does not define me or anybody else. The fast definition of epilepsy is an abnormal electrical activity in the brain, I have no idea what the etiquette for addressing that is. The etiquette for addressing me is by name and with respect, if you cannot respect me do not address me. Empathy is seldom seen and never heard unless you can understand and for understanding I thank you.

In order to outgrow discrimination you must first have the ability to respect one another, then empathy can be shared between us. This will lead to understanding and you will see the discrimination dwindle.

Sorry but the correct etiquette to address me is with respect.

 

[masterjen]

I don't know why anyone who has epilepsy has to be referred to in any way aside from their name, and as Fedup said, with respect, just as anyone would and should be addressed. It is no different then announcing "Here comes the guy with cancer" or "That's the lady who has a big mole on her cheek".
If someone knows the person they are addressing has epilepsy then that is mutual knowledge and does not need to be further addressed unless the person with epilepsy chooses to discuss it further or discussion is somehow vitally important (medical appointment, safety concerns, etc.).
To refer to those with epilepsy in a more general or group term rather than a specific person, I don't like the word epileptic. To me the label "epileptic" is like the word "retarded": no longer socially acceptable and demeaning. I personally prefer "people who have epilepsy" or "those who have seizures".

 

[Maisie]

THANK YOU! This is exactly as I felt: being called "epileptic" IS like being called "retarded". It's degrading, disrespectful and a horrific label. I have disabilities, yet I'm not "disabled".

I know this is a nuance, but it's so important in remaining a courteous, caring, and genuinely compassionate society. I can't thank you enough for your understanding and taking the time to respond.

Maisie

 

[N Sperlo]

I agree with all above. Personally I don't give a damn about what people say to/call me, but when I hear someone call someone epileptic, I am sure to tell them they may insult someone who does have a seizure disorder, although many I have met consider themselves "epileptic".

Err on the side of caution. Beyond that term, they should get the same respect as everyone else because they are just as normal as them, right?

In regards to the "sanitization" of the school, man do things change...

 

[Maisie]

I really appreciate your response. Especially liked your point that those with seizure disorders might be insulted if someone referred to them as "epileptic". I have decided my reaction to being called an epileptic may have been an over-reaction...except it was said in such a demeaning and repulsive tone. Such a nasty tone that it took me right back to high school and the "cleansing". Thanks for taking the time to respond Very helpful!

 

[Topcat]

I have to say that most people have been very kind to me when they know that I have seizures. Usually they find out when I have a tonic clonic seizure right in front of them.
Where I live the Fire Dept. doubles as paramedics and they are very considerate.
I have to say that the rudest people I have met are some of my neurologists. Some of them are very inconsiderate.