stigma of epilepsy

New Topic Post Reply Printable Version
[ << Previous Thread | Next Thread >> ]

alexa
New Member


Date Joined Apr 2005
Total Posts : 2
   Posted 4/3/2005 6:23 PM (GMT -7)   
My husband was diagnosed with epilepsy about 35 Years ago.  He was given dilantin 3 times a day and has not had a seizure since.  So there shouldn't be a problem.  Wrong.  When he was younger he would not disclose his medical condition where he worked because the way society viewed people with epilepsy.  Now a days it is hard concealing it because of the drug tests by employers.  So he has been disclosing his medical condition.  Most employers didn't seem to discriminate against him because of his medical condition.  Until about 1 1/2 years ago.  My husband was hired and two weeks later another company took over and kept the same employees.  Well I guess they didn't really review the applications that the existing employees filled out.  About a week later my husband was called to his employer's office.  They questioned him about the medical information he gave on his job application.  He explained that he did not have a seizure in over 35 years and he gave them his doctor's name so the could talk to him if thay had any questions. 
Well they escorted him to the gate and told him that he was not to return to work.  I was horrified at the treatment .  I can only guess as to how my husband felt.  
A couple of days later, a supervisor from the company that fired him called and told him that they wanted him to go to their company doctor.  The supervisor said that if their company doctor said it was o.k. for him to work, they would hire him back.  My husband went to their doctor and he placed him on restrictions stating that my husband could not work in safety sensitive areas.  Well the employer said that every job area was safety sensitive and therefore denied my husband from returning to work.  The man that took the paperwork from my husband told him to go to his doctor and get a report to send to the company doctor.  His doctor did not place any restrictions on my husband, but the company doctor still refused to change his evaluation.  So my husband was out of a job. 
My husband is currently working.  He was so scared of what had happened on his previous job that he did not disclose his medical information on his current job.  Now he is worried that his current employer will find out about his condition.  He told me he rather be worried about them finding out rather than being out of a job.  He says if they do find out, he can't be treated any worse then the way he was treated by his previous employer where he had disclosed his medical information
My husband was being honest about his condition.  My husband told me that his previous employer made him feel criminal and had done something wrong. He said he felt totally humilated.
I just can't believe in this day and age that he would be ostrisized for having a medical condition.  So don't go believing that things have changed about the stigma of epilepsy.  Discrimination is very much alive when it comes to someone who has been diagnosed with epilepsy.  I just had to get this off my chest because this has been bothering me.  I hope no one else has to go through the humiliation my husband went through. 

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 4/3/2005 8:13 PM (GMT -7)   

Alexa,

I've been through the same thing and yes, there still is a stigma attached to this condition but if you think about it it's no different than an employee having diabetes or a heart condition.

I have to relate it to my situation.

 

I've had EP for 25 years and wanted to make this comment;
 
"If a qualified person is not hired or is terminated from employment as a result of a seizure condition, it is considered a form of descrimination and a violation of your Human Rights" resulting in a hefty fine or  jail time to the employer as per the Canadian Human Rights Act.
 
The employer must provide adequate work accommodations and/or special needs required to do the job.
 
My bosses thought that I was putting it on so I wouldn't have to do certain things.
Through my employer (Government of Canada) they finally sent me to a "neuro/psyc" to examine me and DOCUMENT what I can/can't do.
 
I don't know where you're from but I'm from Canada and we have the right to request this type of exam, in MY case it was my employer that requested it.
 
As a result of it being documented, my employer sent the results to "Health Canada" and since the job was being illiminated, the report showed that "as a result of the long term use of the meds, I could not learn new tasks "and requested that I go on DISABILITY and then medical retirement.
 
That proved to my employer that I was telling the truth all along  and NOT FAKING IT.
 
Randy (Ontario, Canada)

Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 4/3/2005 8:34 PM (GMT -7)   

Alexa,

It's me again (Randy)

Hi Alexa,
Just out of curiosity, has your husband been experiencing obvious side effects from the use of dilantin?
 
It is documented that it is hard on the liver, causes abnormal hair growth (where you don't want it), and/or overgrowth or softening of the gums.
 
I also want to say that I've been on this drug for 25 yrs and I have my blood monitored weekly and my liver is in good shape.
I see the dentist every 3 months(because of the dilantin he wants to see me every 3 mos.) and my gums show no sign of dilantin use.
 
I do however have unwanted hair growth (legs, arms, chest, back,)  but bald on the head. (I don't know if thats hereditary or from the drug)My arms and legs are like Robin Williams.
 
I've noticed other side effects such as stigma (sp) (eyes), paranoia, profuse sweating, poor co-ordination and bad gait, erectile dysfunction, to name a few.
I also take pheonobarb and the only effect I get from that is drowsieness and getting tired. 
 
Randy (Ontario)

 


Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day


alexa
New Member


Date Joined Apr 2005
Total Posts : 2
   Posted 4/4/2005 7:45 PM (GMT -7)   
Yes RanMan, My husband is having side effects from all of the years of taking dilantin.  He has profuse sweating and they also said it can deteriate the joints.  He is having a lot of joint pain. He was having problems with his gums, but he doesn't seem to be having that problem anymore. He does get his dilantin level checked regularly. 
 
Mary, My husband has not had any seizures in over 35 years and he is still stigmatized.  I can only imagine a person who doesn't have seizures under control what they must go through.  I do hope that you will be able to return to work full time.     

RanMan
Veteran Member


Date Joined Feb 2003
Total Posts : 665
   Posted 4/13/2005 9:19 AM (GMT -7)   

alexa,

I've only had one gran-mal siezure in 26 yrs. and I too am stigmatized or labelled. Because of the side affects from the meds, it has slowed me down and made me uncapable of learning new tasks so after fighting with my employer of 30 yrs to keep my job, My employer put me on Disability.

I worked for the Canadian Federal Government and it wouldn't look good if they let me go after they came up with the Human Rights Act which makes it illegal for an employer to let an employee go for having a seizure condition (that's a form of discimination) so they got around it by offering me Disability and then when that gets used up, I go to medical retirement til age 65.  I'm only 48 now.
 
Randy
Diagnosed with epilepsy and ulcerative colitis in 1979,
Been on meds ever since.
 
275mg-dilantin/day
120mg-pheonobarb/day
3,000mg-Mesasol/day

New Topic Post Reply Printable Version
Forum Information
Currently it is Thursday, December 08, 2016 5:13 PM (GMT -7)
There are a total of 2,735,036 posts in 301,268 threads.
View Active Threads


Who's Online
This forum has 151368 registered members. Please welcome our newest member, Martinese.
380 Guest(s), 15 Registered Member(s) are currently online.  Details
Lymepilot, THE HAPPY TURTLE, mikeb2308, Sarebear89, Girlie, mpost, yancync, LG13, Huddie, gfields, ChickenArise, Blu's Mama, HeyNoodles, Mister Mike, iPoop


Follow HealingWell.com on Facebook  Follow HealingWell.com on Twitter  Follow HealingWell.com on Pinterest
Advertisement
Advertisement

©1996-2016 HealingWell.com LLC  All rights reserved.

Advertise | Privacy Policy & Disclaimer