Defined by a Disorder

One of my pet peeves is how people use the term “epileptic.” It irks me when it’s used to describe people with epilepsy. I am not an epileptic. I’m not defined by the disorder I have. I’m many things: a teen, an environmentalist, a vegetarian, a guitar player, a female, a Canadian, a girl. And I happen to have brown eyes, brown hair, straight teeth … oh, and epilepsy.

Epilepsy is a part of who I am. But it’s not more than that. Maybe I’m being overly sensitive here, but I just think that when one describes oneself as an epileptic it has the potential to limit them from seeing themselves as anything more than someone who has seizures. And I’m not saying we shouldn’t talk about it – in fact, I think it’s really important to be open and honest about my epilepsy. But at the same time, I don’t want to be defined by it. I have epilepsy but I’m not an epileptic, I refuse to be defined by my disorder.

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One comment

  1. I find this topic interesting.

    There is a lot of variation in preferences for people with various conditions or/& disabilities.
    For example, many people on the autism spectrum, consider autism to be a core part of their identity, and therefore identify as autistic, or sometimes as an “autist”, or collectively “autists”.
    (For an example of an individual who prefers this, Emma, of the blog: Emma’s hope book.)
    However, not everyone with a particular condition/disorder/disability will choose to identify with it, and likewise the reverse is true, that even if many don’t there will be some that do.
    I think it’s important to acknowledge that it’s a personal choice, and that it should be taken on a case by case basis.

    For example, while many people who connect with including yourself don’t want to be called “epileptic”, but I have actually met people who did identify themselves as epileptic, since they felt it strongly impacted their lives enough to be part of their identity, and I would respect their choice to be called epileptic, just like I will respect your choice to be called a person with epilepsy.
    — I also think people should also be respected if they change their minds about how they want to identify, since I think that’s, again, about choice.

    I know for myself, I don’t mind being defined by my disorders to a degree, depending on which one.
    Some I am more likely to say I “have” as opposed to talking about them as part of who I am/my identity.
    For instance I’d say I am a synesthete, and I am an anxious person (both identity oriented statements) but I’d also say I’m a person diagnosed with OCD, or that I have sensory processing disorder (Person first for OCD, and neutral claimant of diagnosis for the other)

    So yeah, I definitely think how people want to be described should be up to them based on personal preference, and per the diagnosis. 🙂

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