Stigma and Epilepsy (or any stigma)

Posted by Leonard @jakedduck1, Mon, May 11 11:09am

Although this poem was written by someone with Epilepsy it applies to anyone who has suffered the indignity of being stigmatized be it health related or not.
I’ve had Epilepsy for 53 years, 44 years with unrelenting seizures. I’ve been fortunate to not remember many of my thousands of seizures or many of the insulting comments made by ignorant uncaring individuals.
To me the stigma is worse than the condition.

I’ve Epilepsy
What’s that to you
You look at me like I’m not there
In the street strangers stop and stare
I’ve Epilepsy
I ask myself
Do you care?
Life with Epilepsy
It’s unfair
The ache and pain
The bumps and scars
Seizure after seizure
Tiredness
Forgetfulness
To name but a few
I’m glad it’s not happening to you
Please remember
I am a person
With a heart
With feelings too
All I ask is that you love me
For the person I am
Despite my condition
There’s a lot I can do
& if you gave me the love and time
You’d see it for yourself too
So please be gentle
Please be kind
Just because I’ve got epilepsy
I’m still a person
Through and through
I’ve epilepsy
I hope you see now
Me
I’m just like You
So I’ve got epilepsy
So what ???
I’m human
I’m just like You
Jake

@lsittll I can understand the confusion surrounding diagnoses when multiple illnesses are present, and when taking multiple meds. Headaches can be a symptom of many illnesses, as can dizziness and tachycardia and a host of other things. That's one good reason to seek a second opinion, one whose specialty is anxiety or perhaps a young neurologist who's up to date on diagnosis and treatment.

A common recommendation for being misdiagnosed is to write down every symptom you have, and date them; if you've had both seizures and panic attacks, document everything, being specific about dates and what you're experiencing. Document everything, including doctor visits what they say. I always look online at the doctor's notes and compare them with what I know was said. I've noticed that there are sometimes discrepancies, that things that are in the notes that didn't happen.

Documenting might even give you clarity for yourself, seeing things written down in pen and ink. (Or on your computer). It would be helpful to write down everything you said and everything the doctor said – as much as you can remember.

I keep a journal, and write in it what I did that day, what a doctor said, what meds I stopped or changed dosage, and what meds I started. I usually will write down my pain level (or a range) I had that day. Since I started doing that, it's been really useful to go back and look at my medication changes. I wish I'd started writing years sooner. If I stopped a medication I make a note of the reason, and what the side effects were. Doctors like that. I started doing this because my memory has never been great, and unless a medication did something extremely unusual, I don't remember any of those things.

Two words have become helpful to me, document and advocate. It's not in my usual nature to speak up for myself, but I've begun taking the advice of many people who write their experience here on Connect: advocate for yourself.

Will you let us know what you do going forward? What kinds of doctors you see, what they have to say, what their treatment plan for you is. Maybe others of us would be helped by hearing about your journey. One thing I wonder is what the difference between your seizures and your panic attacks. Thanks for letting us see into your life.

Jim

Liked by Leonard, mxyzptlk32

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@hopeful33250

@lsittll I am sorry to hear that. How long have you had epilepsy? Do you have a better doctor now?

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I have had epilepsy for 52 years. The doctor was supposed to put a battery in my VNS. I haven't seen the doctor since. I haven't wanted the VNS or seen any benefits of it now.

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@lsittll

I have had epilepsy for 52 years. The doctor was supposed to put a battery in my VNS. I haven't seen the doctor since. I haven't wanted the VNS or seen any benefits of it now.

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@lsittll
Good afternoon,
I was curious how long you had the VNS?
do you have any side effects from it like coughing, voice changes, problems swallowing, sleeping. Have you asked your doctor about your headaches being caused by the VNS because that is a side effect of VNS?
Some say the longer you have it the more effective they become.
Take care,
Jake

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Hello
I have had the VNS for five years. I have had some side effects of voice changes and problems swallowing. I have a lot of problems catching my breath when I walk fast. In fact when I exercised once it felt like there was a knife stabbing me down me throat. I haven't asked my doctor about the headaches being a side effect. I have migraine headaches and I didn't know the VNS could effect them.
I never noticed any change in it. My doctor never said it would be more effective the longer I had it. She just is so insistent that the VNS will help. It helps others and is widely used in the clinic. – I'm not one.

Laurie

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@jakedduck1

@isittll
Good morning,
I'm sorry to hear you had to experience the indignities of stigma. When you were fired was it before enactment of the ADA (American disabilities act) of 1990?
Since it's enactment anyone with a disability can't be fired as long as they were able to execute their required job duties. It also applies to the application process but businesses still find ways to wiggle out of hiring and firing people with Epilepsy. I don’t know what it’s like to be fired from a job but I know what it’s like not to be hired based solely on having epilepsy.
When I applied for a job in 1971 I must have put on my application I have epilepsy. When the lady asked me I said ”yes,” she tore my application in half and said, ”we don't hire cripples.”
It's too bad people must hide an illness for fear of being ostracized but it happens all the time.
I tell people and they can either except it or not. If they choose not to I figure they aren’t worthy of my friendship anyway.
Take care,
Jake

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Leonard:
I'm sorry to hear you had an employer refuse to hire you based upon being disabled. I do not recall when I was fired but I do know that years later when I saw an attorney regarding a different case he said he would have taken the case when I was fired. I didn't sue at that time I was fired because I had a mother who didn't stand up for herself. Today I don't let anyone step on me! They take responsibility for what they do.
As far as completing job applications (all which are online) when it asks do you have a disability I always choose the choice that says "I do not wish to say." I will not reveal to an employer my epilepsy. I only told an employer after being hired when I worked in a Brain Injury
Program at Kennedy Krieger Institute.

lsittll

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@lsittll

Leonard:
I'm sorry to hear you had an employer refuse to hire you based upon being disabled. I do not recall when I was fired but I do know that years later when I saw an attorney regarding a different case he said he would have taken the case when I was fired. I didn't sue at that time I was fired because I had a mother who didn't stand up for herself. Today I don't let anyone step on me! They take responsibility for what they do.
As far as completing job applications (all which are online) when it asks do you have a disability I always choose the choice that says "I do not wish to say." I will not reveal to an employer my epilepsy. I only told an employer after being hired when I worked in a Brain Injury
Program at Kennedy Krieger Institute.

lsittll

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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!!

Liked by Leonard, mxyzptlk32

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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.

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@lsittll

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.

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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!

Liked by Leonard

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@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

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