Tag Archives: stigma

Coming Out of The Depression Closet

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So this is not an easy post for me to write at all. If you know me in real life, you will understand why, but the majority of you don`t so I will give you a quick run-down. I am a perfectionist, too hard on myself, and nothing is ever good enough in terms of my own achievements. (Well sometimes they are, but they feel short lasting and I must always strive for better). I also disregard my achievements and say they’re “not a big deal”.

Okay let`s keep that in mind. The short of it is this: I am depressed. I know there is a huge stigma in our culture surrounding depression, and it is not talked about very much. Well I am going to take my ax and burst down the wall of stigma and along with many other internet bloggers, I am joining the conversation of mental health.

I’ve learned that through my experiences with depression, different people have different ideas of what depression means or looks like. People who are struggling with depression are often mislabeled as unmotivated, and lazy, to name a few. This isn’t conducive to the healing of people with depression because calling a person with depression unmotivated  will feel even more unmotivated to do something that needs to be done. Honestly, some people with depression wake up in the morning and have zero clue why they feel shitty. People might ask- did something bad happen? Are you okay? Well maybe nothing really “bad” happened, and there is no straight explanation to their mood. People who are depressed don’t want to be depressed. If they could, they would “snap out of it” in a second. It”s not that easy though.  Like I said, depression isn’t all about feeling sad. It’s about lack of concentration, increased or decreased appetite, sleeping too much or too little, and unexplained aches and pains.

Check out this info graphic from buzzfeed to illustrate what I mean http://www.buzzfeed.com/annaborges/depression-101-yo

I have been great at wearing masks in the past- and to be 100% honest, I still wear masks from time to time. When I say I wear a mask, I essentially mean that I have been severely depressed but you would just think I was the most chipper person you knew. It`s a drag being depressed, and I don`t like dragging others through the mud of depression with me. Some people can see through my facade of upbeat moods and smiling. One thing about depression though- people are not always sad. There is a whole host of emotions that happen when someone experiences depression. Some of them are very heavy emotions such as guilt. Try carting guilt around with you every single day. It gets tiring. My depression goes in direct correlation with my Epilepsy, which is most likely because they are not well controlled.

With my Epilepsy, I have experienced depression on and off ever since 2011. It hasn’t been fun, but I just wanted to tell you.It is very hard to describe how I feel. I forget to eat lunch. Always. I sleep too much, and I have little triggers that can set me into a melt down. I have depression. I am working very hard to get better. Feeling better seems like an exceptional plan.

Love you lots xox

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Educating Friends and Family About Epilepsy

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So I thought that this would be an important blog post to write about. I know that I am not the only one who needs to educate others about my Epilepsy. I have been grumpy about educating people about Epilepsy because- hello! Google! But then I realized some important things when I was talking to my boyfriend’s family about my Epilepsy and Seizures.

1. First of All, People Care
I know that sometimes I felt frustrated about people asking me about my seizures because I felt that my Epilepsy was all that I am. That is so not the case! People ask me because they want to know what to do in the event of a seizure, and what to expect. People also care about my well-being, which is a really important factor to remember!

2. Teaching Seizure First Aid is Crucial
This point may not be as crucial if you *only* have nocturnal seizures, but if you could have a seizure at any point- whether in the mall or on the couch, your friends and family need to know what to do. Seizures are scary, and from personal experience- I know that having people know what to do in the event of one makes it much better.
In case you have forgotten here are the first aid steps:
1. Move any dangerous furniture or items
2. Loosen any tight clothing
3. Do not restrain the person
4. Stay calm
5. Time the seizure- if over 5 mins call 911
6. Put something under their head if they fall and roll them on to their side (sometimes there is a build up of saliva during a seizure which could make it difficult for the person with epilepsy to breathe).
7. Be reassuring after the seizure, and stay calm as they “come to”

3. Stigma still Exists!
Talking to people about your Epilepsy, and also that you are able to do so many other things is so important! It is important to talk about other interests, so people know what to do, but it is not a secret that you feel ashamed of. Shame is a very heavy emotion. Also sweeping Epilepsy under the rug is not healthy, and is contributing to more stigma- perhaps due to internalized stigma. Let’s get rid of stigma! We all have our limitations and challenges!

4. Being Vulnerable Builds Bridges
I know I have talked about this before, and Brene Brown, Social Work PhD studies vulnerability. But think about this- if you are able to be open about your own struggles, maybe the other person will come out about their struggles- whether they are chronic illness, mental health, children with either of the former, financial issues- the list goes on and on. You never know what will happen when you open up, but you may find a lasting connection with someone.

I hope you are all doing well! Keep fighting the good fight! xox

Seizures and Mental Health; A Twisty Road

keep-talking-about-mental-health greenSo I haven’t talked about this at all on my blog. Mostly because I was embarrassed and had internalized stigma about it. Well, here goes:

    When I went home in 2013 to take a year off from university, my neurologist had diagnosed me as having both epileptic seizures as well as emotionally based seizures, which are otherwise known as Psychogenic Epileptic seizures (PNES). PNES is defined as “attacks that may look like epileptic seizures, but are not caused by abnormal brain electrical discharges. They are a manifestation of psychological distress. Frequently, patients with PNES may look like they are experiencing generalized convulsions similar to tonic clonic seizures with falling and shaking.” (http://www.epilepsy.com/article/2014/3/truth-about-psychogenic-nonepileptic-seizures)

     People are scared to talk about mental health issues due to fear of being stigmatized, or shunned. Not to mention there is so much misunderstand about various mental health issues and sometimes people only believe the stereotypes that they hear about. How would people respond to me if I told them that some of my seizures were responses to psychological distress? Would they be more likely to steer away from me or would they embrace it with open arms? My mind told me that it was definitely the former, not the latter. Our society places a huge value on being autonomous and independent. Being hit with a double whammy of some form of mental health issue on top of a chronic condition was enough to make me weary of others reactions, so I avoided talking about it. Having epilepsy in and of itself is hard enough, so adding one more stigma to the list wasn’t something that I was pumped about.

     I stopped blogging for awhile after that because I was worried that a future employer would find this post and see me as ‘unstable’ and even less desirable as a candidate for a potential job. What does this say about mental health in our society?!

      Hello My Name Is I have been extremely depressed before, and during that period of my life I could barely crawl out of bed. I was having ongoing seizures, was still in classes, and I found that I was able to make it through to Wednesday but then I completely crashed. I stopped going to the gym, and my zest for life in general was gone. Life was meaningless. I cried everyday for a week, yet I convinced myself that I was just having ‘a bad day’. Except a ‘Bad Day’ meant every day. A bad day my ass!! Something’s going on if your energy plummets and you feel sad and have to leave class early due to constant crying. My mom was worried that I would drop out of classes. I just pushed and pushed through it but could I just ‘snap out of it’? (A common myth of people with depression). NO! It was like I had fallen down a hole and was stuck without a ladder.

       Thankfully this depression did not last forever, and although I indignantly refused Anti Depressants, I managed to heal. I’m not totally sure how, but I got through. It wasn’t a question of “snapping out of it”, but over time I felt more like myself. I am more of my usual bubbly self who dances in her room to dance tunes and smiles while walking down the street. Sounds corny, I know but my life is a little corny sometimes. Even my parents could tell over the phone how much better I sounded. Parents are weird like that, hey?

      Anyways, let’s fast forward to November 2013. I did extensive testing to find out more about my seizures, and the doctors concluded that ALL of my seizures were electrically based. So essentially I didn’t have Psychogenic Epilepsy seizures as well as epileptic ones. I was relieved about this, but that’s not the point of this post. I wanted to shed light on how having a double whammy of a diagnosis (Epilepsy and emotionally based seizures) could have really shifted my life around.

      I know for sure that if I truly had a diagnosis of emotionally based seizures only my closest friends and family would know about it. I consider myself to be very open and compassionate towards others mental health issues, even though I have no idea what it’s like to live with it. On the other hand, I am pretty tough on myself and it would probably take a long time to accept it. Exercising compassion towards yourself is difficult, as you know who you are and who you want to be. If you are not who you want to be it can be sometimes be frustrating, difficult, and even infuriating.

     Essentially. I wish there was less stigma about mental health issues in our society so people would actually feel comfortable talking about it. I find that talking about important things that I’m going through really helps me to process how I feel about it. I also wish that mental health issues wouldn’t get thrown around as a joke, like “Oh I’m so OCD today or I’m so Bipolar today.” Some people really struggle and it is not okay to make light of it. Depending on where you live, it can be even difficult to access the health care that you need, or perhaps your family doesn’t believe in mental health issues and are not even willing to help. Can you imagine that? Maybe you already know what I mean, I don’t know. I am sure there are people in the world who are comfortable with talking about their mental health issue, which is amazing. I just wish that it was safer for people to disclose. If my diagnosis of emotionally based seizures was true, I know I could talk the talk, but it would be a hell of a journey to walk the walk. Love you all! xox

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AMAZING NEWS! You Don’t Wanna Miss This!!


DSC_0313Hey guys, so I have some pretty exciting news! This is the landmark of being seizure free for one month! I made it! It feels like my birthday! Wait, even BETTER than my birthday!! I wish I could have cake and presents for it; it feels like such a milestone. I hope this is actually the beginning of seizure free living, and not just a lucky streak. Please cross your fingers for me. I need all the good vibes I can get! Here’s a quote from a song that’s been keeping me strong and making me feel inspired. You can do whatever you want, as long as you believe it’s possible. Why WON’T it work out?!

Everybody is a star

It don’t matter who you are

Keeping on reaching for your dreams

It aint as crazy as it seems

Own It” -Black Eyed Peas

http://grooveshark.com/s/Own+It/3kaJQR?src=5

Love you all! Hope this has helped those out there who are struggling with seizure control. I’m right there with ya! xox

 

The Challenges of an Invisible Disability

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Firstly, this is only meant to be from my experience and about living with Epilepsy. It is not meant to be a compare/contrast piece about physical and invisible disabilities. Everyone has their own experience and I can only speak from my own experience,

The challenging thing about living with epilepsy is that it can’t be seen on the body. Except for some bruises that I’ve gotten from falls due to the seizures, you can’t tell that I have a seizure disorder.

When I was a child, my epilepsy was not something I needed to share with people because my seizures were well controlled and I never had a seizure in public. Only my family and very close friends knew that I had epilepsy, but I could hide it and be seen as more than just “Sita with seizures”. As I’ve gotten older, I’ve needed to learn how to disclose, and tell people the appropriate first aid. It can be awkward to talk about, as seizures are not tangible and I’m scared with how to the other person will respond. On the other hand, I try to take the approach of being really calm and relaxed about having seizures, with hopes of the other person will feel relaxed as well.

I hate having an invisible disability because I can look like I’m doing well while in reality I can have a headache, and feel like I’m going to have a seizure because I’m feeling triggered by hot weather. The other thing about having epilepsy, is that it’s not obvious. For example I was waiting for the skytrain (like a subway), and I felt a lightning bolt go through my leg (not an actual lightning bolt). My leg started to shake and was rigid at the same time. I tried to stay calm and at the same time I managed to hop sideways to prevent myself from falling over, but to an onlooker this behaviour probably looked ridiculous. Most seizure activity to a person unfamiliar with seizures looks bizarre. This is frustrating because seizures can be mislabelled as “drunk behaviour” or being on illicit drugs. Also, since there are so many different types of seizures, people don’t always think to respond or they’re not sure how to help. Some of my seizures can look like anxious fiddling (clenched fist, tapping fist, rigid leg) so I can have a seizure and people won’t even notice. Although it is more obvious if I am standing or on a chair where the seizing causes me to slip out of it. Sometimes I just collapse, which causes people to assume I’ve had a heart attack or stroke. I am so thankful that my seizures are short.

Thankfully I have had people help me when I’ve been in tough times. Don’t get me wrong, there have been many people who have rushed to help me when I have been alone and had a seizure in public. One time when I was on a bus I was sitting on the aisle seat. I started to have a seizure and started to lean towards the aisle close to the woman who was in the row across from me. She didn’t know what was going on but she grabbed my shoulder and yelled to the driver “I think something’s happening here!” The seizure lasted only 15 seconds or so, but I thanked the woman for grabbing me. “I wasn’t sure what to do, I hope I didn’t hurt you!” The woman said. At that moment a hurt shoulder was the last thing on my mind. I was so grateful for the woman’s quick reflexes. Even though she had no idea what the hell was going on, she saved me from doing a nose dive into the aisle of the bus.

I feel like there’s also not enough public knowledge about epilepsy and seizures in general. This is partly why I started this blog. I wanted to get more information about epilepsy into the public, and if I could at least get more first aid information into the general public, I could feel more comfortable living as a person with epilepsy on a daily basis. Since my seizures are more frequent, I feel the label of being a person with epilepsy more so than I did when I was a kid. This is very difficult. I hope that having epilepsy doesn’t shut doors to different opportunities, due to stigma or misinformation about seizures. I am just going to continue on, as I would without this condition, and explain to people that having seizures isn’t a big deal. I just can’t let them stop me in my tracks, because I’ve done too much work to not keep going.

epilepsy care bare

I Am Embarrassed to Have Seizures

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I have never really talked about this much before on my blog. I have talked about stigma, which is the major root of this feeling, but not this feeling alone. Now I am going to look at this underbelly of my feelings, and look under the corpse of the whale and really look at what it is that I have avoided for so long.

I am embarrassed of having seizures. I am embarrassed of when I have seizures in public. I can tell when people revert their eyes, or when I have to leave the room to get some air or when there’s too much stimulation. I am embarrassed. Let me examine the word embarrassment. I would say that at the root of embarrassment is some sort of shame. It feels shameful to lose control of my body. It feels gross to involuntarily drool or make snorting sounds. I have bumps and bruises all over me from falling off chairs and flipping off beds. I try to make the most of the cards I was dealt in life, and so I do, but seizures make it difficult to do certain things. The other day I was at an event and due to the nature of the event I was attacked (I wasn’t actually ‘attacked’ but it makes it sound more dramatic) by a mob of flash photographers. It was a major trigger for a seizure and I couldn’t be part of the photo. Thankfully I had some ativan on me, but I had to be careful the rest of the night, and I felt groggy and needed my caffeine to keep the night going. (Even though I have sworn off mostly all caffeinated drinks). I made the best of the night and absolutely refused to let the seizures get me down, and thank god very few people noticed, but it has taken the wind out of my sails and I am resting for the next day in order to regain my stamina for the next day.

My seizures sometimes have warnings and I can sit down quickly and in a safe spot, and sometimes I have no warning at all. Sometimes I have no choice but to just sit down and seize and move around uncomfortably with curious onlookers. I fucking hate it! I wish that part of my brain would stop! I am the type of person who smiles all the time and who will tell you that things are always going well. It is hard to talk about this kind of stuff, and it causes pain and anxiety.

Everyone cares about me, and I SO appreciate that. Where would I be in this world without them? Sometimes though I just wish I could shrink into my seat and not receive the type of attention that I do. I am grateful for the people that care for me, I just wish they didn’t have a reason to be caring. You know what I mean? I love them all and I am so glad to have them in my life. Anyway, this is the end of my rant. This is the most true and raw I have been in awhile. I hope you see it. Love you all! xox

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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