Stigma and Epilepsy (or any stigma)

I'm glad to know that you found a more accepting community to live in, @lsittll.

@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

@jakedduck1 and others in this discussion group. As I mentioned in an earlier post, I've been reading A Mind Unravelled, written by Kurt Eichenwald, who has epilepsy and I've been horrified to learn about how he was treated by the medical profession early on in his diagnosis. He seemed to have more acceptance by friends than he did the medical profession.

I'm just wondering if any of you had problems with the medical profession wanting you to not admit to anyone you had epilepsy?

Yes@hopeful33250. A neurosurgeon asked me what the symptoms of my seizures were like. When I told him my heartbeat raced when I have a seizure he said they were panic attacks. The type of seizures can be mistaken as panic attacks because of the symptoms, but to have a neurosurgeon say they are something like that. That is like saying my seizures are some kind of emotional/mental problem. Where did he get his category medical degree? He is even at the University of Maryland and is supposedly one of the best.

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

@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

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.

@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

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

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