Stigma and Epilepsy – Are There Solutions?

Stigma. It’s a word we know well. When seizures are well controlled, it’s something you never have to think about! You’re practically living a ‘normal’ life! The fear of having a seizure isn’t at the top of your mind. You’re not always worrying about disclosing to people, and thinking about whether you will be accepted or rejected for it. According to an article by M.Ahmad, (2011) Epilepsy stigma is considered to be one of the most important factors that have a negative effect on people effect on people with epilepsy. It can have an even more debilitating effect on the person with epilepsy than the seizures.

First of all; let’s start off with a definition of stigma. I use the word stigma all the time, but I had never really gotten a solid definition of what it means. According to Ahmad, “the concept of stigma was first introduced by Hoffman in 1963, who defined stigma as a loss of status and power resulting from separation of those stigmatization from the general population because of a characteristic that has been culturally defined as different and undesired.”

Weiss and Ramakrishna (2006) define Stigma as “a social process or related personal experience characterized by exclusions, rejection, blame, and devaluation”.

I know most of these words aren’t my own so far, but I don’t want to make up definitions of what stigma is. I also found an awesome article about stigma and epilepsy, and I’ll put the link at the bottom of the page. Anyway, whether you have epilepsy, some chronic illness, disease, or identify as something that isn’t seen as something that isn’t “mainstream” I’m sure you can relate to this post.

The author identifies 3 types of Stigma:

Perceived Stigma: which is the feeling of shame of being epileptic. This type of stigma is commonly associated with illness and medical conditions. The person with epilepsy thinks that they will automatically be devalued because of their epilepsy, and will adopt social withdrawal strategies, which will reduce their quality of life.

Enacted Stigma: Is actual episodes of stigma where it is believed that epilepsy is a product of greater sin and present danger to non-epileptics.

Courtesy Stigma: This is where the whole family is involved. A family member, such as a child, may be kept at home, and the diagnosis is kept secret from the public, in fear of seen as being “different” or putting shame on the family.

Although Stigma greatly effects many people with epilepsy, all is not lost! Here are some of the many things we can do to help improve the situation of stigma in People With Epilepsy :

Early Treatment of People with Epilepsy
There was a lot to write, and it wasn’t my passion, so I decided to focus on the other two;)

Education

Education is the most important tool for fighting Epilepsy Stigma. In order to improve society’s attitudes towards epilepsy, it is essential to get the correct information about epilepsy. Until people are misinformed with the wrong information, stigma will continue to be an issue. Ways to educate people about Epilepsy are through media venues, lectures in schools, churches, in schools, mosques, and social gatherings.

Self Advocacy

I believe this step of reducing stigma is essential. People are hearing about epilepsy from the Horse’s mouth, so to speak. You are telling people what it’s like to have epilepsy from a first hand experience, and you are the expert of your own seizures and what you need. This thought is kind of scary. My dad told me this once. I’m the expert of my own seizures. Not in the sense of in a doctor kind of way, but I’m the only one who knows how they feel, and I can advocate exactly what I need. Advocacy can be scary and difficult. I am lucky, I have my parents, doctors, and friends who help me advocate. But I am trying to be a better advocate. According to this article, the role of physicians, health proffessionals, and epilepsy organizations should help people with epilepsy to be self self-advocate so as to gain self-esteem. Couldn’t agree with this more.

On a side note: I’m doing well! I found out I have low iron levels so that’s why I was so tired! I’m now taking an over the counter Iron pill and it’s amazing how quickly it works! I don’t feel like I’m carrying around two bowling balls behind my eyes every day! Hurray! It’s also sunny and I think Spring is coming! 🙂

This is the article that I quoted:

http://docsdrive.com/pdfs/academicjournals/crn/0000/21921-21921.pdf

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Epilepsy, Dating and Relationships

548773_10151208870782732_1535653806_nLet’s face it: Dating and relationships are hard enough as it is. You have to put yourself out there and be open to meeting new people. I kind of think of dating as a job interview: you’re putting on your best face and you always hope that it’s a good match in the end.

Then you throw Epilepsy into the mix. Do you tell your date about having epilepsy? Should it be mentioned on the first date? The second date? Not at all? It makes sense to not want to disclose right away; you don’t want to freak out your date when you first meet them. In my experience though, it just comes up, and it’s better to just tell the other person, so they are prepared in case something happens.

I was on a date one time, and I wasn’t planning on telling said Dude about the Epilepsy, but we met at a coffee shop and he suggested we go for drinks. I smiled and said “No, I don’t drink”, knowing very well that I’d just opened a can of worms. He was interested at this point. “For religious reasons? Or something else?…” His voice trailed off. “I have epilepsy”. His response “That must be really inconvenient falling asleep all the time!” Oh my goodness I laughed so much! I’ve never had someone confuse Narcolepsy and Epilepsy before.

I’ve been pretty lucky in my dating and relationship history. My epilepsy was well controlled when I was dating, so I didn’t have to worry about having a seizure on a first date, which is a relief. (Although it is not well controlled right now). All of the people that I was in the past responded really well when I told them that I had epilepsy. Mostly I just got questions as to what epilepsy was, and what they could do to help me. My ex boyfriends didn’t need to worry as much about it, as my seizures were very well controlled when I was with them, but they still understood that long days and lack of sleep triggered seizures. Seizures weren’t at the forefront of my mind when I was in those relationships, because my seizures were very well controlled. The mother of one my ex-boyfriends actually had epilepsy, so it wasn’t a super foreign concept to him. One of my other exes was with me for almost a year and never witnessed a single seizure! Can you believe it! They were mostly all in my sleep!

My current boyfriend is very supportive about my epilepsy. I told him about it on our first date, just because I figured it would be a safe thing to do. Also, let’s face it. I wear my heart on my sleeve. He has a family member who has epilepsy, and has witnessed a seizure or two before meeting me, so he wasn’t afraid of them. He just rolls with the punches, and can tell if I’m acting a little funny. I’m sure it’s not easy supporting someone with epilepsy, but he does an amazing job, that’s all I can say. Also, he never makes me feel “different” or “weird” in a negative way. He reminds me that I’m normal, yet unique, which is huge for me, because accepting the seizures is a long and twisty road.

Anyways, my advice for dating and epilepsy? Well, you didn’t ask but I assume this is why you’re reading this. I say it’s safer to tell your date. It doesn’t have to be a huge deal. It can be casual,such as by the way, I have epilepsy this is what to do. If you’re still uncomfortable, give them a number of someone to call if something serious happens. I understand that you don’t want to make the date all about your epilepsy, but it’s good to have your bases covered. If the guy or gal is a compassionate person, they will understand. I think generally people want to help and do what’s best in a difficult situation, so don’t be afraid to mention your epilepsy when you’re dating. The more comfortable you feel about it, the more comfortable they will feel. Love to you all! xox

PS What do you think of the new layout!?  🙂

….But Where’s the Info About Epilepsy?

Today I was sitting my my doctor’s office (my regular doctor, not my neurologist) while I was waiting for my appointment. He was running a bit late, so I was just sitting there, relaxing, and listening to a podcast on my Ipod.  The waiting room of my doctor’s office had a big window and a bunch of pamphlets about various health conditions all around the edge of the window. There must have been about twenty different pamphlets ranging from issues with babies, breast cancer, osteoporosis, HPV, and other chronic conditions and diseases. Out of all the pamphlets though, I did not see a single one about Epilepsy. I didn’t understand why! Epilepsy is not a rare condition! Shouldn’t more information be readily available? If this information was readily available to people, it would help put a little dent in the stigma, define types of seizures and also prepare people for what to do if they witness someone having a seizure. I just couldn’t help but notice that. I believe that every health condition is important, so why wasn’t a pamphlet on Epilepsy up there with the rest of them?

Several years ago I would have never noticed this, but now it bugs me. I’m going to ask my local Epilepsy Foundation and see what they have to say about this. Maybe they have some thoughts! What are your thoughts on it? I’d love to hear!

Also, I hope you’re getting psyched about the Day of Purple on March 26! Nothing better than raising Epilepsy Awareness by wearing purple! (One of my favourite colours!)

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Check out this Facebook group for Epilepsy https://www.facebook.com/theepilepsynetwork?fref=ts

The Best St. Paddy’s Day I Ever Had

I was in my first year of university, and St. Paddy’s Day was on a week day. I was on my way to the library to study, because I’m nerdy like that. I only knew it was St. Paddy’s day because my friend asked me what I was doing, and I said “Aw, not much”. It’s true! I have no problem with people going out and having fun, it’s just not my favourite holiday since drinking is one of its major key elements, and let’s be real, I am not the biggest partaker in that activity.

Anyways, since the library was going to be less cramped because everyone was going to be out celebrating, I decided to get a hot chocolate to help motor through my readings and assignments. I stopped off at the cafe in the library and ordered a drink. As I was waiting for my drink, the barista asked me if I wanted some St. Paddy’s Day whipped cream on my hot chocolate. I was taken a back. “Is there any…um alcohol in that?” “No,” the barista smiled. “We just add food colouring to the regular whipped cream”.

Darn. Always the age old question. To be extravagant or not. What the hell. I was already staying in on a holiday that I didn’t pay much attention to so why not! “Yes please!” I told him. Several seconds later the barista produced the most beautiful hot chocolate I have ever seen. Green whipped cream on top, with delicious chocolate underneath. I brought a lid with me; I didn’t want to squish the Barista’s handiwork just yet. I brought it over to my study station and studied it in awe for a few moments, and in all honesty, it made me smile. I just laughed to myself about spending St. Paddy’s Day alone, and got down to my readings.

The Barista had no idea, but he just made my St. Paddy’s Day. Who knew a little food colouring and hot chocolate could do that?

Hope you all have a great St. Paddy’s day, whether it’s like the one I had, or whether it’s out celebrating with friends! Love you all! xox

Irish HC3

Sita’s Top 10 Things To Know About Living with Epilepsy

1. Phoning an Ambulance is not Always Necessary

Ambulance trips are usually annoying, and expensive. Let me stress the latter: EXPENSIVE. Okay, the most recent times that I’ve been in an ambulance is when I have been in a province where I was covered by a different province. Long story short. A couple weeks later, I received a lovely bill in the mail, charging me for their services. This is not to say that ambulance trips are not always necessary. But generally if I am out and about and I have a seizure, that is everyone’s immediate reaction. I appreciate the care, but remember to time the seizure and if it goes over five minutes phone 911. A hospital can do nothing for me, except throw me in a bed, jab an IV in me filled with Ativan, and give me an emergency button to press for when I feel a seizure coming on. Basically, we’re just waiting for a seizure to happen. Otherwise, they’ll send me home. Ambulances can be very important for other people, but for me, they are rarely needed.

2.Recording Seizures is Absolutely Essential

Recording seizures is no fun, because you have to go through your mind and try to remember what happened during the episode that just happened. It might have been traumatizing, and you might not even remember it very well. I find that if I was alone when I seizure occured it is difficult to record, because I have no one to ask questions. Some questions that I might ask are: “Did I seem kind of out of it when we were chatting on the couch before the seizure happened?” Or, “Was I drooling when you found me on the floor?” Kind of gross I know, but recording seizures help keep track of whether your seizures are increasing or decreasing, and I can show them to my neurologist on my visit. I can also track them and see whether they occured during highly stressful times, during my period, or other notable events. I used to just write the number of seizures I had out by hand in my agenda, but I found a great online tool www.seizuretracker.com that goes into detail of every seizure characteristic. The site also allows you to make graphs to see how many seizures you’ve been having per week per month. It’s an excellent tool to have, and I use it when I go to see my neurologist, as he needs to know whether my seizures have been increasing or decreasing, so he can increase or decrease my medications.

3.Drinking Coffee and Alcohol is a No-No

You have been hearing me rattle on about caffeine, but I can’t stress this enough! Some people with epilepsy seem to be able to have coffee, but I can’t have it. When I first got to University I would get lattes to look all posh, and then I was drinking way too much coffee because I was drowning in work and fatigue. However, coffee just makes me feel more twitchy, and it doesn’t pair well with my already super sensitive body.

As I have made the personal decision to drop coffee from my diet, Alcohol is a non-negotiable. There are even warning labels on some of my medications stating “to not drink while taking this medication”. I don’t drink because I am more likely to have a seizure if I were to, and I don’t want to know what would happen, I don’t want to risk anything. Some people ask me if I feel like I’m missing out on things since I can’t drink, but I honestly don’t, since I’ve never drank before. If I go to a party I will bring an Arizona (the huge cans of Ice Tea) and sip on it the entire night, or if I go out I will always order a ginger ale. I usually just feed off of other people’s energy, and nobody makes a big deal out of me not drinking, since they know I can’t. I’ve even been in situations in restaurants where I wasn’t charged for my drink because it was assumed that I was the designated driver. I don’t even have a license! Hey-o!

4.Getting a Good Night’s Sleep is a Non-Negotiable

Some people can pull all nighter’s and stumble through the day, barely managing, but they make it. If I lose so much as three hours of my regular 8-9 hours of sleep, it feels like death. I don’t have the coffee to keep me going, and I have the side effects of the medications to contend with. While I was in school, missing hours and hours of sleep wasn’t doable. I couldn’t give up all my energy studying or writing an essay and then go to school on no sleep and be expected to pay attention in lectures. There is no way that I can focus. I have learned that I need a very solid routine of going to bed. My routine has changed since taking my medical leave from school, but now I usually start looking at the clock around 9, and will crawl into bed around 9:30, meditate for 20 minutes, and then watch some Youtube videos or listen to some podcasts before sleep. It is hard when I get invited out to an evening party, and I start to feel tired at 11, while everyone else is still partying at full blast. What can I say though? I just need my sleep, and there’s nothing wrong with that.

5.Eating Regularly is Essential

It seems like a no brainer: don’t skip meals! It’s bad for you. But it’s so easy to forget a meal. You get caught up in something, and before you know it, the morning whizzes by, and it’s late afternoon and suddenly you can’t wait for an early dinner. I generally didn’t skip meals, but now I have noticed that when I spend too much time without eating between meals, I get sluggish. Then I get even more fatigued, and the fatigued can eventually lead to a seizure. So if I am going to be out and about for awhile, I keep a protein bar in my purse, just to make sure that I have some back up form of food source.

6.Self Advocacy is Difficult, yet Important

Sometimes I find it difficult to advocate for myself, because my epilepsy is a hidden disability . It is hard coming out and explaining to people that I have seizures and going over with them the proper protocol of what they should do if I have a seizure in their presence. It’s kind of like ripping off a bandaid over and over again. I have gotten more used to it, so I am getting better at speaking out for myself.Essentially, self advocacy is so important for epilepsy (and other chronic conditions) because you need to speak out for what you need. I have had to write letters, make phone calls, and have meetings explaining things all pertaining to my epilepsy. I am understanding my epilepsy better, so now that I have a stronger awareness of it, so I can better vocalize it to others. I am also learning to deal with the emotional aspects of having epilepsy, so it does not interfere with my self advocacy. It’s not a skill that comes overnight, but I’m getting there, slowly but surely.

7.Learn Skills to Deal with Anxiety

As you may have read in my previous post, https://sitagaia.wordpress.com/2013/03/10/dealing-with-the-anxiety-of-seizures/ anxiety plays a big part in having seizures. Even if I haven’t had any seizures in a certain        number of days, there still lies the fear that a seizure will occur in a second. I have learned that meditation helps to calm my breath, as well as talking about how I am feeling with my friends and loved ones. If I am not feeling well, it is essential that I talk about it with someone, no matter how embarrassing or silly it sounds.

8.Exercise on a Regular Basis

Exercise is super important! I can’t stress this enough! Before my medical leave, I would go to the gym at least four days a week. It made me feel so happy, and it helped release any stress that I was feeling. Now I am not well enough to go to the gym, but I go for a walk every day, and since I live in a very hilly area, I get a pretty good workout! Stretching your legs can do wonders for your body and mind! So don’t leave this one out of the equation!

9.Keep In Touch With My Doctors

It is essential that I keep in touch with not only my neurologist, but my family doctor, to monitor the progress of my health. I need to go to my scheduled visits in order to determine what direction to take with my medications, and to see if there are any other specialized doctors that I should be seeing.

10.Never Leave the House Alone 

I never leave the house alone! Even when I take my dog for a walk-I bring my dog! Even then, I bring my phone and tell my mom the route I am going to walk. My seizures are not stable enough for me to take public transit or anything like that, so I need to make sure that I am always accompanied by someone, just to make sure. It’s okay with me, I mean I never get lonely! Over time I will be well enough to go places by myself, but for now, this is just how it’s got to be!

Anyways, remember that this is my own personal list. Hopefully in a year (or less!) it will change for the better! What are some of the things off of your list? Lots of love! xox

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Dealing With the Anxiety of Seizures

cute-love-quotes-for-her-568x580Hey guys. I know I haven’t written in awhile. I’ve been pretty busy! I’ve had my boyfriend visiting me from out of town for the past week, so I’ve been trying to enjoy the visit as much as possible. This visit so far has been awesome. It’s also been pretty tiring, because we’ve spent time trotting around the city, seeing friends, and going on double dates. I’m stubborn as hell, so there’s no way that I want to spend his entire visit just hanging out at home. Just because my seizures aren’t entirely under control, I want to do my best to get out into the world (or to the coffee shop, or to a double date) and just have fun. My boyfriend is one of the best people to have around when I am having a seizure, because he is calm and collected, and knows the drill about what to do. So, in this case, I wasn’t worried about going out and about, because he is good at handling seizures. I mean, he has witnessed too many to count, so he’s pretty used to it. (Which kinda sucks, in the grand scheme of things).

Today’s post is about dealing with the anxiety that comes along with having seizures. I’ve never dealt with this until the last year or so, but now I am really feeling it.

The other night my boyfriend and I went out for a double date with my friend and her boyfriend, and we all wandered around downtown and grabbed a coffee together. The day itself was stressful, so I was trying to ease myself into a relaxed mode of chilling out with friends and having fun. I couldn’t stop worrying though. A few days before, I had a seizure and my seizing arm was stuck in my coat pocket so I crashed to the sidewalk. I need to add right here that this is one of my worst-case scenarios. I don’t walk with my hands in my pockets for the very fear of getting my hand stuck in my pocket.

544657_339910969457954_669556561_nAnyways-back to the double date: I just kept replaying that moment in my head, and couldn’t help worrying what it would be like if that moment happened again. Needless to say, I wasn’t really ‘in the moment’ when we were walking outside on the way to the cafe. At the cafe I felt a bit more relaxed. I had a sneaking suspicion that it had something to do with the tea that I was drinking. This whole non caffeinated tea is doing something for me! I felt safe because I was sitting in a chair, just drinking tea. If I were to have a seizure, I wouldn’t be going far. It’s crazy though. The worry of having seizures takes you away from so many wonderful things. Even though from the outside I am laughing and it seems as though I am having a great time-don’t get me wrong-I probably am, another part of me is still paralysed by the fear of a seizure.

After the coffee part of the double date we all walked along the water to look out at the city lights and to see if we could see any stars. There were also some weird structures, including this chime that if you touched the pipes it would make music. As soon as we walked up to it I knew it would agitate some part of my brain that might cause a seizure. (Sigh. Sounds weird, I know. I don’t really get it either). My friends and boyfriend ran up to it, and started playing with it, because it was actually pretty cool. If I wasn’t feeling anxious up the wazoo and agitated in a seizure kind of way, I probably would have joined in. Instead, I isolated myself by sitting on a bench farther away where they couldn’t see me. My reasoning was to let them have their fun, and I was so embarrassed by feeling triggered in a seizure kind of way by this music, that I decided to walk away from it. It was easier than dealing with it.

Soon my boyfriend and friends realized that I wasn’t with them, and ran over to find me. My boyfriend was especially concerned, and at this point my anxiety was spiralling out of control. I felt hot and nervous in addition to this overall feeling of panic running through my body. At this point I could explain what was happening, and completely breakdown crying, or just keep myself together. All I knew was that I needed to get home, and fast. I told my boyfriend in a panicked whisper that we needed to get home. We turned to my friends and I told them that I was tired, even though I had adrenaline pumping through my veins about a mile a minute. I didn’t want to go through the whole story about being anxious. I needed to get the f**k out of there before something bad happened. I just needed to be on my way home as fast as possible. My boyfriend and I rushed to the subway, and as I was getting my ticket for the subway, my breathing was rapid and my heart was pounding. Thankfully, my boyfriend and I made it home, and I calmed down on the journey. I didn’t end up having a seizure, but this was one of the few events that I’ve had where I’ve had some sort of anxiety type of event related to seizures.

This event was very bizarre, and its almost embarrassing to share, because I don’t fully understand what happened.

If you’ve had a similar experience, I’d really like to hear from you. Or, if you have any suggestions as to what to do if I find myself in that situation again. It’d help me feel less embarrassed and freaked out about the whole thing. Love to you all! xox