Why Epilepsy Awareness Is Essential

With the times of inclusiveness and diversity, in truth, we do not know the genuine definitions of these words. Over the years, some TV shows/movies, workplaces, schools, and other settings have promoted these concepts. Most of the workplaces with a DEI (diversity, equity, and inclusion) initiatis are putting on a charade to manipulate us as they make a profit. Reality is that in America, capitalism makes the country go around.

We say that our differences make us great

In the United States of America, there are people with differences in culture, race & ethnicity, or nationality. That's what people love about America: our differences. And even though people believe that our differences make us great, unfortunately, in society, there is always going to be discrimination, bias, or a neglectful lesson that the country has yet to learn.

While America represents itself as accepting diversity, in our political climate today, we have learned that differences can get you in trouble. Many people in the disability world are feeling judged more than ever.

Prejudice toward those with invisible illnesses

Even though we do have the Americans with Disabilities Act, we continuously see prejudice from not only loved ones, but also from employers. Well, there are some visible disabilities that people can't say are made up. However, there are other disabilities where people believe, since it's not visible to their face, that we must be making it up.

Discrimination against people with epilepsy

Epilepsy, unfortunately, is one of those conditions that people don't either believe right away or, at best, have any knowledge about.

In America, there are 3 million people who have epilepsy. While this isn't as big as the 65 million people worldwide, these 3 million people need to be recognized in the United States.

The label of being disabled

Every psychology, criminology, or sociology class at one point has discussed the labeling theory. Labeling theory, in summary, is the consequences of society's ideal life and judgments of individuals. Our lives evolve around the labeling theory from the time we are born. Throughout life, everything is labeled, from the food we eat to our medical conditions.

Having the label of being mentally challenged, strange, slow, or not capable of doing anything, results in gaslighting and/or discrimination. It is enough to make people mask their disability for as long as they can. We has to endure masking. With that being said, too many others face the reality that modern life isn't a 1990s teen/family.

The reality of epilepsy awareness

Although diversity awareness often includes people with disabilities that the world can see, it leaves awareness of people living with epilepsy barely nonexistent.

In America, anyway, the only definition of seizures/epilepsy centers around the convulsive seizures that are imprinted in people's minds through popular culture. The incomplete description is very telling of how America views epilepsy.

Wearing a mask to hide our epilespy

A lot of us have to mask and hide several side effects of epilepsy in hopes of fitting in. We hope not to bring too much attention to ourselves (we believe we can be a burden and do not want to bother others). We wake up, put on our masks, and live an everyday lifestyle in order to be accepted.

While people look at epileptics as functional beings, in truth, we suffer from the crippling anxiety of not knowing when the next seizure will come. In addition to the anxiety, we adjust our lifestyles to accommodate our health. From a medical standpoint, we endure the trials of new neurologists/epileptologists continuously, adjusting our meditations from the brand to the dose(s).

Enough blame to go around

All the stigmas and stereotypes of epilepsy have become strained efforts to form a relationship between the media (TV shows and movies) and the epilepsy community.

The media doesn't get to take all the fall for our shortcomings in understanding epilepsy. The misunderstandings can also be based on the town you grew up in and the people you grew up with. In rural areas, epilepsy resources are nonexistent, while urban towns have slightly more resources. Of course, suburban towns have the most resources and credible neurologists/epileptologists. Whether you live in a rural, urban, or suburban town, racism plays a role in the relationship healthcare workers may have with epileptics or their willingness to provide assistance/resources.

Even if your neurologist/epileptologist is the best, they will not tell you everything you need to know about epilepsy. They'll teach you the basics of using an EEG and explain that you'll have seizures. However, they're quicker to explain your medication dosages than anything else. Well, I'm not saying all doctors are like this, but there are enough that there needs to be a discussion.

I love that some doctors are informative and do try to understand their patients, but still, they are often forgetful or unknowledgeable about certain information, such as the newly updated research about seizures. It is hard to get a better understanding of epilepsy when there's a conflict of old versus new information.

Discrimination within the epilepsy community

Misconceptions, even within the epilepsy community, not only affect people's understanding but also the reactions from our community when we ask for support. Whether we will take accountability or not, we do participate in the label theory. We see the epilepsy community divided based on the type of seizures and everyday struggles. Some of us, like myself, do not have to see the doctor often and are what people consider "functioning." What people do not realize is that the functioning ones are the most psychologically tortured because we have issues, but no one believes us (except for your supportive loved ones).

Whether it is a subconscious or conscious decision, people discourage others from telling their story because they fear, "If my community doesn't believe me, what makes me think other people will?" For instance, Facebook support groups have played an either/or role in causing someone to feel supported or, conversely, feel more alone than before.

In my opinion, there is no true definition of epilepsy and what comes with it. With epilepsy being a chronic illness, the exhaustion alone is unbearable.