Recently, a forum I read had a poll question about how people respond to epilepsy for you. Some of the choices were things like: “overreact, under react, just right, they don’t know, they don’t care and other.”
Many people chose to hide their epilepsy from all but their closest friends & family (due to fear caused by the stigmas attached to having “E.”)
I haven’t been silent about my seizures. I’ve been honest since what I thought was my first one on the 14th of June 2011. (more on that later)
This poll question made me stop and think about the reactions people in my life have had. I’m happy to say most have been supportive and understanding. They’ve questioned me, wanting to know & understand more about epilepsy and what it means. A couple people have overreacted and I’ve had to sort of calm them down and assure them the world isn’t ending, my life isn’t ending, it’s OK. A few had no real reaction other than being relieved that in some way we finally had some answers.
I can’t complain, I am very blessed with supportive people in my life.
Then Saturday happened.
It was my first “punch in the gut.” I found out that a close family member (who I have not directly spoken to about my epilepsy) was saying that my epilepsy is made up & all in my head! ----OK so they are partially right as epilepsy IS in the head…. but I digress.
They’ve apparently been saying to other family members that I “willed” myself into seizures after reading about them on the internet! WHAT?
Have I read about seizures on the internet? Sure! AFTER my 2nd seizure, because I was trying to figure out what the heck was going on. I knew the neurologist said that the 2nd seizure would follow within the first year if I was developing a “seizure disorder” ( the term they use for epilepsy because they feel it’s a softer blow than saying “E” outright). I didn’t really learn too much and was still convinced I wouldn’t have another seizure… even though I’d discovered that 2 or more seizures = epilepsy. AFTER the 3rd seizure on 5 January 2012 I read more so I’d know what kind of information I needed to have for my 6 month follow up with the neurologist later that week. Glad I did too because I had everything in order to give him when we were in his office.
I was literally speechless after hearing this. After I got over the initial shock I then became angry. Not your run of the mill “I’m miffed” sort of angry, more like totally enraged angry. I could not believe this person would think such a thing much less say it out loud to other members of the family. I wanted to call them immediately and say, “Do you really believe a neurologist would place me on an antiepileptic medication…. at a fairly high dosage… not to mention a very expensive medication if I was making this up? Do you REALLY believe a neurologist, trained in epilepsy and specializing in electrical anomalies in the brain, would be fooled by someone making it up? SERIOUSLY?” AARRRRRG!
After speaking with my husband Dave, (ok more like ranting to him) he said I needed to let it go and try not to let it bother me. (Good advice since stress & anxiety can trigger seizures in someone with epilepsy.) He said we know the truth and the people who truly love and care about me know the truth and that’s all that matters.
I also talked to one of my best friends about the situation. Her response was maybe I should take the ambulance bill, the ER bill and the neurology bills to this person and show them the costs involved with my “made up” seizures. She knows me well and the family member of whom I speak and was not surprised. She told me (as did my hubby) not to waste my time & energy worrying about it.
Easier said than done I’m afraid. It was a very painful blow from an unexpected source. I’m no longer as angry about it as I was, but there is still pain from being deeply wounded by the situation. It’s tough when you expect support, love and understanding from family and find that instead you are being talked about behind your back and dismissed as “making it up.”
For a short amount of time I began to rethink what I have felt to be a calling. I thought about ending my blog, not saying one more word on facebook about epilepsy and telling our pastor I will not speak the Sunday before Global Purple day.
Following my third seizure I had become excited with all I was learning about epilepsy and wanted to share it with anyone who would listen. I have “reshared” posts of epilepsy facts from various epilepsy foundation facebook pages in order to promote awareness. I felt called to become an advocate of epilepsy awareness. I felt blessed to be able to do these things which not only help myself, but would help many other people. To be able to speak for people who couldn’t or wouldn’t speak for themselves. Then with one blow from a family member I nearly gave all that up.
Now, after a few days to let myself settle down, although hurt, I will not let this person become a roadblock to doing what I know is right and what I feel God is calling me to do. We all face roadblocks in our lives and they do not define us, it’s how we handle them that defines us. I will not be stopped. I will not let this person silence my voice and stifle my calling.
I think I just had my very first hard lesson in why many people choose not to disclose their epilepsy.
Hugs to you all,
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