I’m currently in my first year of an integrative counselling and psychotherapy diploma. Unfortunately this has been online due to the pandemic. I’m no stranger to working online as I did my MSc completely online for three years, however the intensity of the diploma training feels very heightened online. Asking for extra breaks has made me feel very self-conscious and aware that I’m very different to the rest of my classmates.
During the foundation year of my diploma (last year), I had my first tonic clonic seizure in three years. Thankfully having found the right cocktail of medication, I’ve managed to control my both types of my seizures (tonic clonic and focal onset) and haven’t had any since October last year!
I still find it so frustrating that people know and understand so little about epilepsy. Some know nothing at all about epilepsy. It’s been frustrating for me to go through the process of explaining what epilepsy even is to my tutors and classmates, on top of then having to explain my epilepsy and how it affects me. Very often I find myself trying to convince people of the effects of epilepsy and what it does to the body and the brain. I've had people snigger when I stammer while my brain recovers following a bad episode; I get extremely forgetful and I've lost large chunks of my memory which annoys people.
On top of that, there are the other intersections of my identity as a Black Queer woman. The stress caused by the prejudice and discrimination I face on a daily basis often leaves me feeling on a precipice of having a seizure. I often feel a lot of pressure to ‘address the elephant in the room’.
I’m also never asked for my pronouns (she/them) and I often feel under pressure to correct people, which then leaves me feeling incredibly stressed and overwhelmed and again feeling like I’m on the precipice of a seizure.
Having a ‘chosen family’ is incredibly important for members of the LBTQIA+ community. Often, many of us have been ostracised or alienated from blood relatives for our sexuality and gender. Being a queer woman with epilepsy makes having a chosen family all the more important to me. My chosen family help alleviate some of the stress of being a queer epileptic by providing me with a secure base to feel safe and not a burden.