Stigma: is a mark of disgrace that sets a person apart. When a person is labelled by their illness they are seen as part of a stereotyped group. Negative attitudes create prejudice which leads to negative actions and discrimination
Well that’s a nice description isn’t it and we hear it all the time in the epilepsy community. Seeing it written down like this sends a chill down my spine that my daughter may face this stigma for the rest of her life that she is defined by a stereotype of having Epilepsy. Seriously is that right, hell no but it happens all the time.
We all have stories. You know the ones like the mum you meet at school who doesn’t invite your child to their house because they are scared their child might catch it (it’s okay to silently curse them under your breath when you walk past them saying your schoolyard hellos), the teacher who thinks it’s only just seizures and has no idea about the other issues that can occur because of the meds or seizure activity (watch out mumma bears claws are going to come out if you don’t get it), the odd looks or lack of help when your child has a seizure in public (they are not freaking leppers get over yourselves and either keep on walking or get help) and one of my favourites “well they look fine” (it’s invisible illness you fool).
Stereotyping a person with Epilepsy is not possible because there are so many different seizure types and epilepsy disorders that you could have 20 people with epilepsy in a room and not one of them would have the same things going on (not to mention they are human beans and have different personalities just like everybody else).
What I want the general public to think about.
How would you feel if someone told you that you were a liability in a school performance and as such you shouldn’t go for a major role?
How would you feel knowing that you could start a job and lose the job because of your Epilepsy?
How would you feel getting your child out of the car in a disability park and being abused for taking that spot from someone who needs it?
How would you feel being told your child doesn’t even look like they have had a seizure or are having a seizure by a nurse or paramedic?
How would you feel if your own family members told you that you were just an over reacting parent and there is nothing wrong with your child?
All of the above happen and many many thousands more are said to a person who has epilepsy in their life.
Here is the weird thing it’s not like we are talking about a rare condition epilepsy is one of the most common neurological conditions worldwide.
So what has happened? Well I think it’s a lot like mental health conditions both occur in the brain and what we don’t understand we are scared of. It wasn’t that long ago that people with epilepsy were put into institutions and were not allowed to marry (yeah this discrimination runs deep).
BOO…. Did I scare you nope well don’t be bloody scared of seizures or epilepsy it could happen to you tomorrow and then you would know what stigma means and how it can define you. Get out there and get educated Google is an amazing tool for learning new things and a simple search like “seizure types” would go along way in learning about Epilepsy.
This Ragdoll Mumma has quite a bit of hidden anger from stigma towards Epilepsy can you tell. xo