Sourcing Credible Information Regarding Epilepsy
Ok. So, there are heaps of us out here on social media, doing blogs, videos, etc., regarding epilepsy. We all do it for different reasons and we are all very different people. What this can lead to though, is a lack of consistency for readers/viewers when it comes to key messages and supposed facts.
Now I’m not a Neurologist, Epileptologist or in fact a doctor of any kind, and because of this and my level of awareness regarding constant updates and developments within the epilepsy industry, I know that I’m not the person to medically advise others regarding their condition.*
What I can do though, is speak of my own experiences, introduce other people from all over the world (patients, neurologists, scientists, family members, employers) through Epilepsy Sparks; to provide a broader picture of what epilepsy means to different people. I look at reports and research provided by internationally respected medical institutions, universities, doctors, and charities. This is how I learn. The data and conclusions from these sources challenge my own thoughts and continue to ensure that I’m open-minded.
I compare the online information regarding epilepsy to that of politics: there’s a lot of inaccurate, dangerous information out there… in addition to a few sources of true, constructive and useful information. In order for us to filter out the former, we need to judge a writer’s credibility by researching them and comparing the information that they provide, to other credible sources within the industry.
- Before you accept a declaration regarding epilepsy – check out the credibility of the source;
- Compare what you read on social media (which is written by a patient), to the information provided by medical and scientific reports, or ask your doctor/epilepsy nurse/local epilepsy charity for their opinions
- Be aware of the unconscious bias held by us all. Challenge both your own and others’ preconceptions through asking questions;
- Realise that people can be experts in their feelings regarding their epilepsy, but that doesn’t make them an expert in either your epilepsy or the condition in general;
- Online we are an international community and we need to be aware that there are different perceptions of comments/supposed humour; due to our different cultures, levels of sensitivity, tiredness, etc.. Try not to be offended by things straight away (I know, it's not always easy...!). Most of the time things aren’t posted to purposefully offend or induce anger;
- Remember that there will always be angry, nasty trolls out there. If you suspect that someone is one, they probably are. "Step away from the screen", breathe deeply, and rather than respond in the way they wish; ignore/report/block them;
- Identify a couple of groups on social media that work for you and that don’t bring your mood down. Sometimes It’s hard for us to realise when social media is adversely affecting us; so maybe take one day a week away from social media, focus on your wellness and assess how you feel as a result of the characters and groups that you’re surrounding yourself with;
- Don’t ever post something that you wouldn’t feel comfortable saying face to face;
- Keep all of the above in mind when posting things online yourself!
Look after yourself. Be open-minded, do your research, ask questions and learn from credible resources regarding your epilepsy!
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* Indeed, even if a person claims themselves to be a Neurologist or Epileptologist, unless they are your doctor, they don’t know about your overall health, your past and current situations, what you want to achieve re your life and health, etc.. Keep with your registered doctor and formally change them if you aren’t happy!
I have wrote about epilepsy for years . The best way to learn is to listen to a person . Doctors do the same but they think medication and surgery . At first I didnt know about cannibas . I have learned over the years " Be strong ! " . Most people are scaried of epilepsy because they dont understand. My first paper I wrote about how I felt . As a child I didnt understand . One day Im running around yelling having fun . The next thing I know I`m in a hospital with all these people yelling . My parents crying and my mind goes wild . But over the years I have calmed down an smile knowing " oooh I better sit down ! " I understand the auras the feelings something I call the slaps . Slaps meaning wake up or reminder . At first I didnt watch for them . I didnt care about the deja vu. Older I have too. Please do yourself a favor NEVER be embarrassed of something you cant control ! Smile at people who dont understand . Because some just dont want to listen . I think my favorite thing told to me as a kid . Someone told me you need to pray more ! Hahaa if you say so ! Remember " ITS YOUR LIFE HAVE FUN ! " AcE ?