Admitting illness and reducing STIGMA

[Cint]

If a person in a high profile position can do it, then come on all, LET'S ADMIT IT TO THE WORLD AND REDUCE THE STIGMA OF EPILEPSY!!

Admitting illness like epilepsy reduces the stigma

January 22, 2010 - 10:41AM
Statoil
Leading Oil & Gas Companyon the Norwegian Continental Shelf

It's not easy to admit your vulnerabilities to other people. Fear of being judged harshly, or even worse, spurned for your confession, keeps many silent, particularly in the workplace. The stakes seem even higher when you're a high-profile figure.

Queensland Health Minister Paul Lucas' courage this week to go public with the news he'd been diagnosed with epilepsy at the age of 47 is laudable. His admission just days after he was hospitalised in a "disassociated state" was a shock to everyone.

Lucas' honesty and determination to get on with his job and life set an example to both employers and employees. As Lucas said: "It is really important that people understand that a medical condition, whether it is this [or something else], is not a reason why they can't continue to work in many instances."

Keeping medical conditions, be they mental or physical, a secret at work is a great strain. Difficult-to-explain absences, hiding symptoms from colleagues, the inability to explain to managers why unreasonable workloads could be seriously harmful to your health, not to mention the constant fear of being found out, all take their toll.

[bigbro]

If a person in a high profile position can do it, then come on all, LET'S ADMIT IT TO THE WORLD AND REDUCE THE STIGMA OF EPILEPSY!!

Good on him. It seems ridiculous that in this day and age there should be a stigma when it seems that for everything else, stigma has been shed. High profile people who go public certainly help.

[BuckeyeFan]

CINT


Now if I could just make myself do it. Each year I am a little more open, but still not able to just tell most people.

[gigi]

I always took for granted that I was to remain closed mouth about my epilepsy. I have been to therapy in the past. The only comment I remember getting from a therapist about it (whom I dumped) is, this condition will worsen as you age?!

Alright, and when did you start specializing in neurology?? That was my thought later after I had quit going to see her.

My family has not had a round table discussion about it with me present, and I do not know about behind my back. Years back when I went status, I just remember my Dad going into his over protective mode with me and calling me everyday. Bless his heart, I know he was concerned, but I would have rather talked about epilepsy, than the usual mantra of get your sleep, slow down, and so on. My Mother is a nurse, very pragmatic woman, but not known for talking about deep issues.

Okay, back to the subject at hand. I have become much more open about my E. now, and almost look forward to the responses I get. It is liberating to a degree!

[Nakamova]

I'm don't hide my epilepsy, but I don't advertise it either. (For instance, no one in my apartment building knows I have epilepsy). I don't feel constrained -- I'm happy to talk about epilepsy if someone brings it up, or to correct a misperception, or to educate folks. And I'll bring it up myself in certain contexts. If someone asks me "what's new?", I have no problem saying "I learned some great stuff on CWE today".

[dennis100]

I gave up on trying to educate people about my condition. Every time I mention the E word there always seems to be a certain uneasiness with the person i'm speaking to. All of my so called friends have vanished except for one. Out of sight out of mind I guess. The stigma attached to E will always be there. For some reason people are freaked out by one simple word "epilepsy." They don't want to hear about it, learn about it, be near anyone with it, etc. In my case that also holds true with certain close family members. Thank God for message boards. It's really nice to have a place that you can go to and find people who are in the same boat that you are.

[seizingbeauty]

I've always been up front about my E. If people can't deal, that their problem not mine! The people worth having around me have accepted and are understanding of the limitation I need to live by. I learnt hard and fast its not worth trying to hide my seizures and the aftermath from them finding out the hard way sucks.

[occb]

My partner and I are discussing whether we should tell his bandmates about what he's experiencing -- we don't have a diagnosis as yet, so that adds a curveball to things, but he's has some episodes in their company, and they've noticed his occasional confusion, spaciness and forgetfulness.

In a previous band years ago he had bandmates who warned him to "stay away from people with epilepsy" -- very odd, since if they had actually known anything about epilepsy, he might have been investigated for a seizure disorder 15 years ago, instead of now. Anyway, this previous experience is making him hesitant to say anything, but the episodes he's having makes him feel like he doesn't really have a choice.

When and if he does decide to talk to them, he wants me to come with him to help explain everything, which I'm more than happy to do. Maybe I can alleviate any concerns his bandmates might have, and normalize this for them as well. Plus, they could help me a lot, by letting me know what they've observed, which I can include in the information for the neurologist.

I figure being open is best, but it's not my decision to make, and I don't have to live with the stigma. Mind you, one day they're going to need to know why he's wearing welding goggles during shows

[tam bam]

I am honest and open to people but I too don't always get a warm reception when it comes to E. There is a lot of people out there that do not understand. I get a lot of questions about it more than anything. I have had some rude comments though that have hurt my feelings but I just think that those people are just narrow minded and are old school.

Occb, as for the past band mates they were being narrow minded. Maybe try them out on a test question. For example: What do you think about Epilepsy? Perhaps they know someone with it or have a loved one with it. You never know. Perhaps the new band members will be more receptive to E. I sure do hope so for your partner's sake. I know he likes music. As for the welding goggles. It can be his stage image. He can start a new trend!

tam bam

[matchu]

My partner and I are discussing whether we should tell his bandmates about what he's experiencing -- we don't have a diagnosis as yet, so that adds a curveball to things, but he's has some episodes in their company, and they've noticed his occasional confusion, spaciness and forgetfulness.

In a previous band years ago he had bandmates who warned him to "stay away from people with epilepsy" -- very odd, since if they had actually known anything about epilepsy, he might have been investigated for a seizure disorder 15 years ago, instead of now. Anyway, this previous experience is making him hesitant to say anything, but the episodes he's having makes him feel like he doesn't really have a choice.

When and if he does decide to talk to them, he wants me to come with him to help explain everything, which I'm more than happy to do. Maybe I can alleviate any concerns his bandmates might have, and normalize this for them as well. Plus, they could help me a lot, by letting me know what they've observed, which I can include in the information for the neurologist.

I figure being open is best, but it's not my decision to make, and I don't have to live with the stigma. Mind you, one day they're going to need to know why he's wearing welding goggles during shows

as long as he makes practice and the shows and plays good music, I would think the other musicians would support him and keep the music going. Meeting new band members and there personality and baggage is a big deal. So the others should be supportive if the band is tight, both musically and as friends.

[occb]

I thought welding goggles would definitely work for stage image and keep him from being mesmerized by the lights

matchu -- that's what I figured too. He's a fabulous player, and is very creative at writing, so I think it'll work out. Plus these guys are (so far) very nice and laid-back, so I don't think it will pose a problem. Still, it's a big decision to make.

[McGill]

I thought welding goggles would definitely work for stage image and keep him from being mesmerized by the lights

If any "stobe light" effects will trigger his seizures, it's wise that he know his limitations immediately so he can adjust the lighting effects. For example, he could instruct the stage crew to keep a light of moderate intensity on him and of one color only. Too many different colors have the same effect as a strobe light.

[occb]

Good tips there McGill!

[alivenwell]

I'm open with it. The reactions really vary from one coworker to another. I try to be as normal as possible, which for me is a challenge with or without epilepsy.

[gigi]

recently I went with my daughter to another city she is moving to. The new house she and hubby are moving into did not have a/c yet. Long story short, we went to see the new house, and I started getting hot. My daughter was making noises like I gotta get my Mom into some a/c pronto, not in 2 hours from now!! No one can see our brains, so short of waving a sign, it is hard to get other people to see the seriousness of the situation. I end up feeling like an idiot, like I have to be catered to - AND no one will talk about why I need out of the heat. I have been inside for 3 days straight now - since our heat index is reaching 108!! Okay, I guess this is a rant, but I feel better.