There are a large amount of negative connotations with epilepsy. The first one is that a person who has a seizure must be on drugs. I worked as a nurse in Emergency. When someone would come in because of a seizure it was very common that I would hear some nurses comment on how they must be a drug addict. They would often say it with a great amount of judgement rather than sympathy. It was said almost as if it was the patients fault they had the seizure because they are a dirty, low class drug addicts. Another common assumption when someone came in because of seizures was that they were faking it and it was a pseudo seizure. It was referred to as if they were faking it for attention. Both of these assumptions came with no sympathy and just judgements. I would just bite my tongue and brush it off to avoid unneeded conflict. This shows that even medical professionals hold false and very inaccurate assumptions. I want to make it clear that this was commonly said by only a few of the nurses. However I feel that these negative comments strongly affected other’s opinions as negative comments tend to outweigh positive ones. They were also opinions that were rarely argued against. The lab work and medical imaging seemed to be the sources to let them know when they were wrong.
There was one time I was in a coffee shop in a not so nice area of town. I walked in and there was a girl on the floor having a full Grand Mal seizure. She was shaking uncontrollably on a concrete floor and repetitively banging her head against it. Everyone stood there with their body facing away from her towards the front of the line, their heads slightly turned to watch her and they were either whispering or had their mouths open in shock. Most people’s faces looked like they just smelt a very smelly fart. Not a single person was going to help. As I walked in I asked if anyone has done anything. Some man said in the most judgemental and condemning voice that I should not worry as he has called the police on her. My partner and I ran to help hold her head and position her so she does not choke. As a nurse I watched her respirations, timed the seizures etc. I told someone to try calling the ambulance instead. When the EMS crew showed up they took over and did not ask us a single question about the incident. This also bothered me as that is extremely bad health care practice. However, once they showed up people who made no attempt to try to help what so ever started to yell out things to help such as “she just fell on the floor”. The EMS crew had zero interest in listening. Maybe she was on drugs. I still did not see how that justified leaving her alone to have a seizure and continually hit her head on the concrete floor with no help.
The first seizure I had while working was during my first shift in Children’s Emergency. It was a buddy shift where I was shadowing another nurse. It was right in the morning before I had got to see or do anything substantial. After having a seizure I was recommended that I just go home. I decided to do so and make up the shift later on. I was then confronted by a nurse educator. She told me that maybe this isn’t the right area for me to work in and I should just work in Adults Emergency because I am “not all mentally there”. The “not all mentally there” was her exact words. This hurt me so badly. It was like being stabbed with a sword. I literally haven’t even done anything yet for her to be able to say that. I lost my breath, my eyes instantly filled with tears and I stormed off. I was livid. I made sure she knew that I cry when I am angry as I wanted her to know that she suggested something very wrong. In the end I went to management, I continued to get trained there, she “apologized” or rather just claimed I misheard what she said and I think she made a point of avoiding talking to me which I was very thankful for.
All of these negative connotations associate having epilepsy means that you’re not psychologically stable or mentally capable. Yes, people with epilepsy deal with a great amount of psychological disturbances. And yes, epilepsy is a neurological disorder. A neurological disturbance does not necessarily mean that you are mentally unstable or “not all mentally there”. I make sure to correct these inaccurate assumptions. It has also taught me to not judge other people based on their health problems. These judgements are not only extremely hurtful to the person mentally but also can be physically when they fall on the ground and no one wants to help out. It can also harm a person’s career and their relationships. In the worst case scenario people may start to believe other’s false judgements of themselves or even choose to simply live up to the judgements.
People with epilepsy really have to have a very in touch self perception and strong back bone. It’s almost like you get to choose between satisfying others false negative judgements or to rise above them and limit the effects they have on you. Let me tell you that it feels better then a normal accomplishment when you accomplish something after someone told you or believed that you were not able to so. It is way more rewarding and thats the way that I see it. By accomplishments I do not mean only things like one’s career goal. I mean simply being a happy and confident individual regardless if you have seizures or not. I don’t look at my epilepsy as reasoning for me to fail or accept mental weakness. Rather, I look at it as reasoning to reach for higher goals and show others that people with epilepsy have the capacity to do things regardless of the extra barriers that we are faced with. So, others’ judgements are going to continue to be there and we can just continue to show them how wrong they are.