Stigmas, fear, and shame…coming out of the shadows

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If you’ve ever been overweight and tried to eat a chocolate bar in public, you know you’ll be judged. You’ll get “the look” for eating something that was obviously (in their opinion) the reason for your weight gain. And so, this treat you allowed yourself is ruined. You feel like you have to hide yourself or the chocolate bar, so that you can eat (no longer enjoy) it in the shadows, where no one will notice. So bad is the stigma about being overweight (in the onlooker’s opinion) that the term body-shaming has been introduced into our vocabulary. To combat this, there’s a commercial to encourage women to accept their body regardless of what they believe to be wrong with it. Unfortunately, they often believe that everything is wrong.
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It’s sad, especially when we believe we’ve made progress, that there are still so many stigmas. While the saying is, “The truth will set you free,” that same honesty can result in being treated differently or being rejected. On the flip side, that truth could mark the beginning of a great dialogue that helps to remove the stigma’s power.  Just look at what’s being done with Bell’s Let’s Talk campaign to encourage those people with mental illness to come out of the shadows and get the help they need.

To do my part, I’m going to talk about two medical aspects of my life that have stigmas associated with them.

Note: You are not required to share any medical information with your employer or a potential employer. Check out the laws in your area to determine your rights and ensure that you aren't being discriminated against because of a health condition.

Epilepsy
Like mental health issues, there is a stigma associated with anything associated with the brain. Sometimes there’s the assumption that if your brain is not working correctly, like when you have epilepsy, there’s an assumption that your intelligence is affected. I have epilepsy, and I experienced this ignorance from a neurologist of all people. He asked me what level of education I had. When I responded that I had a university degree, he commented that he was surprised because I had so much brain damage. Ironically, any tests I’ve had done has not shown the source of my epilepsy…the presence of any brain damage.

Another neurologist wanted to do brain surgery even though there was no way to pinpoint what area needed to be removed. I went to see another neurologist and he looked at me like I had two heads when I asked about brain surgery. He told me I have generalized seizures, which means they affect my entire brain. No brain. No life. Scratch brain surgery (like I truly wanted it) off my to-do list.

Since I’m a go-big-or-go-home kind of gal, it’s not surprising that I have three types of seizures.  One type doesn’t even have a medical name for it. Perhaps this is why my neurologist refers to me as an odd duck. I swear it has nothing to do with my personality.
 
The first type of seizures I had were absences. For me, these seizures usually involve staring and brief breaks in activity. This could be as subtle as a brief break in conversation or me dropping something like a pen. When I was first diagnosed (around Grade 6), I was taking about 200 absence seizures a day. Impressively, not only were there gaps in activity, but there was eye rolling and a gurgling sound. Now, while I still eye roll, but not because of my epilepsy, there are days when I don’t remember having any absence seizures.

My next kind of seizure surfaced when I was delivering my first son. There’s nothing like the excitement of childbirth topped with a fully convulsing mother. It was very scary for everyone, although I didn’t have the ability to be scared or panic. I’m not sure who got the worst end of the deal. Fortunately, everything turned out okay. I refer to this as my TV-style epilepsy (aka clonic-tonic seizure). They are a lot more dramatic than my absence ones and are the type of seizure that most people associate with epilepsy.

My most recent seizure type lasts all day. I struggle to speak and perform routine activities. If I show up at work in this state, someone notices the glazed expression, my struggle to speak, and the excessive fingernail gnawing, but it can take a while for it to be noticed. It’s more subtle than my TV-style seizures, but the most frustrating for me. I’m aware enough to know what’s going on, but I’m unable to change things. People are always amazed that I’m totally fine the next day.

Now while I have loving people who accept and treat me well, there have been times when people haven’t been as kind. One person I told said, “Thank God you didn’t have a seizure in my car.” Another person commented that they didn’t want to deal with me when I was flopping around like a fish. Cold and cutting words, but I knew they were made out of fear and ignorance.

Cancer
I found out some people are afraid to admit that they’ve had cancer. Who knew? I’m pretty open about everything (in case you haven’t noticed), so I never considered that people might be afraid of admitting a cancer diagnosis. It’s ironic that your courage is celebrated at something like Run for the Cure and then, outside this type of event, you debate whether you should tell people about your diagnosis.  

People may fear the following:

• You will go from being a person to a cancer patient or survivor. The focus can move to the disease instead of to the unique individual you are.
• You will have trouble finding or keeping employment because an employer believes you will miss a lot of work to go to follow-up medical tests and appointments or will not be able to perform your job because of potential after effects of cancer treatments.
• You will hear everyone’s cancer stories (both about someone being diagnosed with it and how it came back) in addition to receiving recommendations about what you can do to make sure your cancer doesn’t come back.

My Choices
Ultimately, I decided to share my story (both in a book and in my blog posts) for the following reasons:

• It was more important for me to help others by sharing my story than to protect myself from the potential repercussions of being totally honest.
• If I was going to be passed over for a job because of physical aspects of my life, then I didn’t want to work for that kind of organization.
• I had to tell people about my epilepsy so that they knew what to do if something happened. I also knew that they would know about it anyway if I ever had one of my TV-style seizures.
• I didn’t want to live in fear of what might happen.

 
Just because this step was right for me, doesn’t mean it’s right for you…at least at this time in your life. Remember, you're in control and have the ability to educate people and lessen the power of stigmas.

Special Events
March is Epilepsy Awareness month with Purple Day on March 26th. Here are some events taking place in South Central Ontario. Check for local events in your area.