Stigma

For all those of us who have have encountered Epilepsy, stigma continues to be one of the biggest hurdles. Not only do we have to cope with the condition itself, we have to deal with the way it is perceived. Unfortunately, in my experience, public perceptions of Epilepsy are moving at a sloth's pace in many realms! 

Surviving an Epilepsy Alert Dog...yes, no, maybe? You though every day was chaos with the dog, now wait until you have fits and a four-legged friend

Transcript

Hi and welcome to the Tuesday Epilepsy Club series 4 episode 4. Stigma is something that people with epilepsy have to deal with on a regular basis. I've written about stigma to some great degree in my book, Fits and Starts, and this is a chapter from that book. The major public health implications of stigma and social inclusion have only recently begun to be recognized as a theory. It's still young and by no means absolute. but as someone who suffers regularly from fits, it makes perfect sense to me. The finding that experiences of stigma may be seen as threatening, threatening to health, as deliberate acts of discrimination and social exclusion is important and cannot be overlooked. In an attempt to be better understanding to the stigmas of people with epilepsy and their experiences, The scholars Scrambler and Hopkins in 1986 came up with two key concepts: the enacted and the felt stigma. Unsurprisingly, reading about such works has helped me to compartmentalize any prejudice I experience and even facilitates the reintegration after short periods of withdrawal. The thought behind the research was was that patients with epilepsy were as likely to be upset by people's reactions to their seizures as they were to their seizures themselves. This is certainly true in my case. In the most basic form, enacted stigma refers to the acts or incidents of the discrimination against people on the grounds of their perceived unacceptability or inferiority. This included overt discrimination in the workplace or educational institution, neglect, hostility, abuse, any of the above. My experience of enacted stigma went back as far as my journalism course, where I was ignored when I had a fit and later actively excluded from any social events. I started that course with bountiful enthusiasm. sure that I knew exactly what I was going to do, but by the time I finished I was exhausted and started trauma therapy. Felt stigma on the other hand refers to the anticipation of fear of enacted stigma, or in my case the negative reactions following any disclosure of epilepsy, which also encompasses feelings of difference and shame. felt stigma need not be based on personal experiences of enacted stigma, but it's often built upon perceived social responses to something like epilepsy and is as debilitating as enacted stigma itself. My self-imposed exile at university supports this theory, suggesting I was suffering from felt stigma five years before my first experiences of enacted stigma. Even today, I find it easier to get over people's overt hostility than the prejudice and anxiety which builds up in my mind before anyone has even said anything. In recently reported cases of felt stigma, it has been declared by as many as 50% of people with epilepsy suggesting it is a major difficulty. It's the reason I sometimes disappear for a week after a big fit. and why I've been spotted in the bathroom before going out, repeating to myself, deep breaths, deep breaths, it's fine. They don't care about the fits, just calm down. Deep breaths, deep breaths, in through your nose, out through your mouth. In years gone by, I often felt like a fraud at social functions like weddings, until I had confessed to at least one guest that I was epileptic, The feeling that you are hiding something can ruin any chance to relax and enjoy yourself. I have to be honest though, in recent years since the boys got older, I just don't go to weddings anymore. I can't cope with the guilt. Logic would assume that a person's self-image becomes most threatened when the individual accepts the way society views their condition. In my 20s, people's bigoted views about my epilepsy made an impact on my self-confidence. The more rubbish I listened to, the more insignificant I felt, although I'm sure many people with epilepsy have experienced a much more turbulent path to self-discovery than mine. Epilepsy expert Dr Sally Baxendale has criticised the media and the social media for perpetuating outdated myths and misconceptions that fuel the stigma around epilepsy, stating that too often there is an association between epilepsy madness and violence which does not help with the stigma attached to the condition. In the same speech she acknowledged the fact that the burden of living with stigma could have more of an impact on people's lives with epilepsy than the burden of living with the seizures themselves. A person may have a seizure once or twice a year, she says, but they will live with the stigma of seizures all year round. German-born sociologist Gerhard Falk wrote, All societies will always stigmatize some conditions and some behaviors because doing so provides for group solidarity by delineating outsiders from insiders. He describes stigma based in two categories: existential stigma and achieved stigma. He defines existential stigma as stigma deriving from the condition in which the target of the stigma either did not cause or does not have any control. Meanwhile, achieved stigma is defined as stigma which is earned because of conduct and/or because they are contributing heavily to attaining the stigma in question. Interestingly, a study conducted in 2007 prejudice towards chronic diseases, a comparison among epilepsy, AIDS and diabetes found the same pattern of perception of prejudice towards epilepsy by the general public and people with epilepsy themselves. I have always assumed that having a chronic condition has made me more empathetic and fostered my liberal attitude, but this study argued differently and suggested that in society At this time, the degree of felt stigma in enacted was not different. The study went on to say that if people believe themselves to be different from other people because of their condition, then the stigma has been internalised. Once this has taken place, inadequate behaviours and sociological difficulties such as shame, insecurity begin to manifest. One of the reports studied found that having seizures was less salient than those taking part of being epileptic. Years ago I would have agreed with this, but in my view this has changed over the time. Over the last decade, in my teens and early 20s, I revolted against any labels. I too suffered from epilepsy, but was not epileptic. You understand the difference? Honestly, neither do I. But for some reason, I honestly believe there was one. After about 10 years, I exhausted this particular theory and decided I was indeed epileptic, so the name became not so much a label as a truth, something to deal with. My next step was to choose whether I would be defined by this label or whether it was simply a description of me, like having brown hair and dark eyes. Am I more comfortable with my epilepsy or have I resigned myself to a life of inferiority? I would argue the former today, but tomorrow who knows? I have never been asked if epilepsy is contagious. The closest I came was a flippant comment by a parent of one of my son's friends. Well, that wasn't too bright. Where'd you pick up something like that? Remind me not to eat there. In her defence, she seemed as startled by her comment as I was. It was obviously an internal thought that was accidentally externalised. She went bright red and the conversation stopped. The incident got me thinking though. How many people I meet have similar thoughts, but due to social politeness choose not to express them? I didn't experience any problems until my second year at university, and even then it was more of a self-imposed isolation, born from diminished self-confidence and feeling like I was perpetually an outsider because of my lifestyle. It was quite clearly different to everyone else around me, and nothing about that was ever going to change. My freshman year passed in a haze of nerves tempered by Bacardi Cokes and lots of smoking, but then I stopped drinking and going out became an absolute nightmare and insanely boring. As everyone lost their inhibitions after their third or fourth tequila shot, I became more and more withdrawn. After my first year, I was rarely in bed after midnight, but between everyone else's drunkenness and hangovers, aside from feelings of discomfort, I largely escaped unscathed. For me, the patronising quips and looks began after I finished my masters and left the protection of my campus and libraries. I felt safe in education, holed up amongst the books and in the contained space. It is perhaps not a coincidence that I ended up being a teacher in a large inner-city school. I am again anonymous amongst the books. My journalism course was the first insight into just how unfeeling people could be. These were truth seekers, seekers of future and left-wing liberals ready to report on the injustices of the world, the Gaza Strip, a possible third world war, war in Iraq, and yet when I had a fit in class nobody even looked up from their screens and nobody talked to me. Not one person asked if I was alright. I thought I caught a glance between the students, a recognition that I was forever blacklisted. But that could have been my paranoia. I'm not sure why I went back the next day. I'm not sure why I went back at all. I don't remember their names, and I certainly don't remember what they looked like. I just remember feeling a mixture of shame and embarrassment. Coupled with a desperate desire for the floor to open up and swallow me. March 12th Today was unbearable. I survived, but I don't know how. I feel so humiliated. I wish I felt angry, but I'm too embarrassed to be angry. I wanted someone to ask me how I felt so I could explain to everyone that I was okay. I didn't want to go on about it, but I also didn't want to bring the subject up myself in case anyone felt uncomfortable. I didn't have worried. It couldn't have been any worse. Oh my god, I feel like a lovesick puppy, padding around behind everyone for a desperate desire of recognition, anything that would make them talk to me. It's almost as if the class has made a pact to exclude me. When I walk in, the conversation, it actually physically stops, and no one included me in any debates. Even the tutor seemed to have joined in. I wanted to ask, why didn't anyone help me when I had a fit? You're humans. You're supposed to do decent things. But after today's experience, I'm too scared of what their answer might be. Maybe they just didn't see me as a human. I had a dream last night and in it I was one of the students. A figure with no face. Someone replied, Go away. You're not like us. Our future is bright and full of promise. You represent everything which is broken and expendable. If life were a film, you'd simply be written out, cut out, extinct. That's it, isn't it? I'm on a course with a group of people who are trying to make me disappear. They succeeded today, by the way. I felt completely invisible. I wish I could leave. I'm staying from sheer bloody-mindedness. I'm not leaving before they do. If I was doing that journalism course today, I would either choose to ignore the fact that I'd had a fit or ask the students confidently whether they had any questions about what to do in case I had another seizure. I certainly wouldn't follow them around willingly for someone to bring up the topic so I could make my peace with them all. Just the thought of my actions makes me cringe. What was I thinking? I'm not even convinced I was any good at the writing. I loved studying. I love studying about parliament, I love learning about parliament, I love learning the shorthand, and all of that eventually I could get my head around. But the writing was harder than I thought. More importantly, the writing and the time limit was harder than I thought. Having a two o'clock backbench deadline when you're epileptic, not so easy. I found it difficult to focus and frequently went over the designated word count. Looking back now, I should have waited and got myself sorted first. My mind was too preoccupied with trying to work out my place in the world. I lead a double life, unreal, the other utterly unreal. Anyone else would have dropped out and gone back later. But people with chronic illnesses, chronic conditions like this, They can't do that. Giving up, taking a break, it's the same thing. I live in fear of hearing those fateful words. You know the epileptic? She dropped out. Kidnack it. Not surprising. She didn't belong here to begin with. Thanks a lot for listening. That was an episode of Fits and Starts. I'll be back again with the Tuesday Epilepsy Club next week. See you then. Take care. Bye.