I read a lot. I like to read. Sometimes I pick biographies, occasionally I choose feminist literature, it might be a scientific book on running, and once in a while it’s a good old fashioned trashy romance novel. I also love articles, whether in magazines or online.
Here’s my blog topic though: Issue with articles that get published online that do not include the authors name or, especially if it is medical or science based, any sources/citations.
I recently read an article that came up through a website that I frequent. The website is a support group for individuals with epilepsy. People in the group can post articles, related or not to epilepsy and have an open discussion about them. The subject of the article sounded awesome, fascinating, and definitely something I am interested in (and could apply to me!).
It was absolutely terrible. I don’t mean in a poorly-written sense. There weren’t rampant grammatical errors or any inaccurate use of terminology. The title implied it would be medically based and the website that it came from was an information site for people with epilepsy in a geographical region. The natural assumption would be that an official website that provides support and medical information to a community with a specific medical condition would feature articles that either identifies as medical in nature or opinion-based. This indicated neither. It made regular references to studies that have been done, research that exists, consensus in the academic fields, but the article never specifies a single one. Not the facility or hospital that did the study, not the names of the researchers, not the universities from where the consensus came. “Studies show that…” “Research has been done on…”.
The topic was (effectually) how people with epilepsy cope (or don’t) with their condition and the impact of the condition on their emotions. In my opinion, it was condescending and presumptuous. It wasn’t just demeaning towards people with epilepsy either, the approach was patronizing to anyone who lives with emotional struggles, mental health issues (specifically anxiety, insecurity, depression and low self-esteem), and unemployment (or under- employment). A major part of the article was that threaded through the entire piece was that most people with epilepsy should have no more of a problem dealing with their emotions than ‘the next person’ as long as the person with epilepsy has ‘accepted the reality’ that they have seizures.
The article acknowledged medications (including side effects and compounding), seizures, discrimination based on the condition, social and physical isolation, insecurity, economic hardships, loss of control and independence, interpersonal relationships, anxiety and depression.
I would LOVE to clarify from this undisclosed author that despite all of the things I’ve summarized in the previous paragraph from that article, that they expect me to experience all of the other situations in life that neurotypical individuals (“the next person”) deal with as if that list doesn’t exist? All of that, and I am expected to have no more emotional baggage than just anyone else? Or now that I’ve had that all explained, I “should just accept the reality that I have seizures and should have no significant problems dealing with my emotions”.
I have epilepsy and I have seizures. I have the right to the emotional baggage that comes along with that because the reality is that being epileptic has impacted my life. My entire life. Not just the days I have seizures, because it’s more than that, thank you very much.
Ironically, the article also discusses how public misunderstandings and stigma related to epilepsy can add stress to individuals with the condition and lead them to withdraw and choose isolation over interaction. I would argue that articles like this add stress to people. (Angry sarcastic voice): Not only do I have to actually manage a medical condition, if I am emotionally impacted by said condition I am considered “not accepting of reality”?
I don’t need to be told that I have no more to deal with than anyone else.
I have accepted the reality that I have seizures. That does not mean that I do not have the right to be upset when I have a seizure. That does not mean that I don’t have the right to be insecure or anxious about it. That does not mean that I do not have the potential to experience side effects from medication. Sometimes those side effects cause changes, whether applied to my energy level, appetite, weight or overall personality.
Articles like this promote the idea that it’s reasonable to expect that people (everyone, really, not just people with epilepsy) just behave in a neutral manner without the weight of emotional baggage or personal experiences. Stoic, robotic, passive, unfeeling.
Note: I intentionally left out the name of the support group (I am part of a lot of groups) because I don’t want to put anyone in the spot for sharing information when I am just making my own commentary. I intentionally left out the name/specific topic of the article. I am not failing to provide appropriate citations, I don’t want to be accused of some kind of libel. However, my understanding of libel is that it has to be published statements. This is my opinion of the article/the internet only, and if anyone really wants the link, please feel free to email me directly: [email@example.com]
Also Note: I did get this meme from the internet because I love The Hobbit, Martin Freeman, and pretty much anything related to Tolkien.