My leg was shaking and my stomach was in knots. I wasn’t sure how it was going to go over. When it was finally my turn, I introduced myself. I gave my normal spiel and then I added on, “Also, I thought you all should know I have a seizure condition…”. I went on to explain my condition to the group. About how I knew it was scary and could be hard for people who had never seen it. That I was fine, and please don’t make a big deal if they saw me in an episode. It was the first time I had admitted to a group of people that, yes, I have a condition.
One year ago I was diagnosed with a little studied condition called PNES or Psychogenic non-epileptic seizures. An article on the Epilepsy Foundation, written in 2007, says the following about PNES,
“PNES in uncomfortable topic, one that is difficult for both patients and healthcare professionals to discuss and treat. Yet it is estimated that PNES are diagnosed in 20 to 30% of patients seen at epilepsy centers for intractable seizures.1 Moreover, in the general population the prevalence rate is 2-33 per 100,000, making PNES nearly as prevalent as multiple sclerosis or trigeminal neuralgia.2 Despite these startling statistics, PNES has largely remained a conversation held behind closed doors and in hushed tones throughout the medical community – until now.”
PNES are attacks that often look like epileptic seizures, but are not caused by abnormal brain electrical discharges. PNES may mimic absence seizures or complex partial seizures which causes temporary loss of attention or staring. PNES is suspected when the seizures have unusual features, such as type of movements, duration, triggers, and frequency. Doctors and therapists believe that a specific traumatic event can be identified in many people with PNES and may be the root cause of the seizures.
By its definition, PNES is a physical manifestation of a psychological issue and are a type of “Somatoform Disorder” called a “conversion disorder”Somatoform Disorders are those conditions that are suggestive of a physical disorder, but upon examination cannot be accounted for by an underlying physical condition. Conversion Disorder is a somatoform disorder that is defined as physical symptoms caused by psychologic conflict, unconsciously converted to resemble those of a neurologic disorder.
All of this medical talk is to say that I have a condition, and it sucks. Some days I can’t leave the bed because; I either have had episodes the day before or that day. They can last anywhere from a minute to much longer. They can happen at any time and anywhere. I sometimes have fear driving or going out with friends. Conferences and big spaces make me nervous. I am afraid that I will expose myself. That people will panic, rush to help me and only make it worse. At the retreat where I announced to the group my condition, was the first time I told people I didn’t know.
Living with an unheard of and understudied condition is frustrating. There is no guaranteed therapy or cure. There isn’t much information and you often feel alone. I have read testimonies of people suffering from PNES for 25+ years. Unable to work, have children, or just live because of their episodes. It’s depressing and frustrating and embarrassing to say the least. I often don’t speak about my condition. I am afraid that people will treat me like glass. As if I will break at any moment. I am also afraid of what it will mean for my job if they found out. It’s illegal to fire someone for a condition. But that hasn’t stopped organizations and people from making someone’s existence so bad, they will want to quit on their own. There is always discrimination at some level. And as a Black, Latina Muslim, I don’t need any more baggage to carry. However, I’m tired of having to act as if my condition isn’t valid.
So often, conditions like mine are brushed aside because they are less visible than others. If a person in a wheelchair approaches you; you understand immediately that this person is differently abled than yourself. Making accommodations for them may make more sense to some, than making accommodations for me. I appear to fit societies standards of what is able bodied. When I tell people I need to rest, or that I just can’t do something, they don’t understand. They don’t want to give empathy or patience when it comes from someone who presents as able bodied. Instead people think I’m lazy or slacking off.
But today I am coming out of the shadows. I have a condition and it’s ok. Yes, sometimes I can’t do things. Some days I am so tired from seizing I can’t get out of bed. Sometimes I get so anxious about having an episode in public, I don’t go to things. All of these things are ok. All of these things are valid. I am still Kiah. I am still a human being. Even with this condition, I am still me.