Hi, I’m different. In a different way. Not in a way that I choose. Not in a way that I can control. It’s not just a phase I am going through, I am always going to be different this way. As much as I would like to sometimes, I can’t avoid this reality. I can’t avoid informing people around me even though there are times and circumstances where I would really like to be completely normal. Just, not different (or at least, only in ways that I choose).
Lots of people have varying circumstances that make them different. Literally, every person is different from every other person. Sometimes, it is because of the opinions we have made for ourselves. Sometimes it is because of the choices that have led us to where we are. Differences are what make the world amazing and exciting and interesting. Differences are what draw us to other people, to further places, to new experiences.
Differences also have the potential to make us vulnerable to bullying.
I know that I have written about what it was like when I was first diagnosed with epilepsy in previous blog entries. It was 1999. I was 14 years old. No one understood exactly what was happening or why. I lost the friends I had. Life is hard enough for a teenager without having a brand-spanking-sudden-and-unexpected-medical-condition to boot. Especially one that can’t be seen. Not many people actually witnessed me have a seizure back then. I was bullied for “faking it for attention” and at the same time, discriminated against for having said unseen medical condition.
Now, twenty years later, I still have seizures. My condition appears to be evolving so I am back in the process of getting testing, MRIs, EEGs, etc. The seizures aren’t witnessed a whole lot now either. The condition itself still can’t be seen without medical imaging. I have heard statements like “Can you prove you have epilepsy?” and “Oh, you don’t look like you have a disability!” Those two statements alone reflect scepticism and disbelief (in other words, am I faking it?).
Right there, we are back to bullying. It’s a more passive, less direct form. It is more like a subtle gaslighting than overt harassment. Those statements suggest that if you don’t seem or look a certain way, you might not actually have a permanent medical condition. And if you don’t actually have the condition because you don’t look like you do, then you’re just faking it.
I exist in a twilight zone, walking a tightrope, welcome on neither side of the fence. I am “too disabled” to do certain things (in my case, mountain climbing). I am “not disabled enough” that I cannot push my body to be as healthy and active as possible (in my case, running marathons). I have received comments from within the epilepsy community because “my condition can’t be that severe, since I have hobbies and run and work”. I have received comments from outside the epilepsy community because “maybe you shouldn’t be doing things if you could potentially have a seizure”.
I could choose not to talk about it. I chose for eighteen years to downplay (or ignore entirely, when possible) the fact that I have a major medical condition. It was easier and more socially acceptable to pretend my existence didn’t include epilepsy. Except, I know how unhappy I was when I chose to hide a major facet of my life. I felt alone, misunderstood, afraid, hopeless. Most of the experiences I had only perpetuated my belief that I needed to hide my condition.
Now, the public sphere. My health and medical condition are open for commentary and judgement. The degree of severity, or whether I am epileptic enough, are free game for interpretation. The choices made by myself and my neurologist are susceptible to criticism.
Now, I know that when I write each blog posting, or speak at any event, I am putting myself out there and exposing the medical realities that I face. I am choosing that exposure and vulnerability and judgement.
The more I write or speak about it, the more exposed I am. And that’s okay. Because if I can help even one person move away from the hopelessness and fear that I myself have experienced, that is worth that vulnerability.
As for the bullies (whether overt or that subtle gaslighting), I know now that I cannot hinge my self-worth on pleasing the world. I can’t make everybody happy. I am not pizza.