I’m not happy or proud to have epilepsy
It’s funny, but it’s really not funny…
Last week was National Epilepsy Week (although as some of you might know, I don’t care about the word “National” - hence I promote awareness globally) and I was talking with someone I know (I’ll call him John) about work. I mentioned that it was “National” Epilepsy Week, hence I was pretty busy, and his response was
“Oh great! Congratulations! Happy epilepsy week!”
I was shocked. I was a bit speechless, to be honest (it takes a lot for this to occur). I asked, politely, with a bit of a confused laugh:
“What is there to celebrate when it comes to having epilepsy?”
John:
Oh, but you should be proud!
I’m laughing out loud writing this.
This man’s giggle represents mine!
Moi:
“No John…I’m not proud* of, or happy, to have epilepsy, I’m not going to celebrate having this awful, restrictive condition that negatively impacts not just my life, but the lives of millions worldwide. A condition that is so significantly linked to mental health issues, that stops me from driving, which worries those around me, which has led to me having brain surgery, and that, quite frankly, does my head in. I couldn’t be proud of or be happy to have epilepsy.”
John:
Oh, but you should celebrate your epilepsy!
I couldn’t help it; the words just came out of my mouth:
“Really? Why? Do you think that I should celebrate it if I had, for instance, a limb amputation? I don’t understand…!” 😂
Yeah, our conversation swiftly changed paths after this moment!
I’m not going to celebrate having a medical condition like epilepsy! I’d far rather not have to be doped up on drugs and have it cause such restrictions in my life. Indeed, others in my life would rather not be worried that I might have a seizure, might injure myself, and suchlike.
I totally get it when people celebrate achieving something that has been challenging for them (whether they have a medical condition or not). Yes, let’s celebrate those things! But that is distinctly different from celebrating having a condition, just because.
Examples:
I know someone who has epilepsy which doesn’t really affect her day-to-day life. It’s brilliant! She takes a small dosage of an ASM (Anti-Seizure Medication), experiences no side effects, and has her seizures fully controlled! She’s not proud to have epilepsy. She’s not proud of and does not celebrate achieving things because she has epilepsy.
A friend of mine has awful refractory (uncontrolled) epilepsy which affects her life terribly. Somehow, she still manages to get along day-to-day, She’s tough. She’s amazing. I can understand how she might sometimes be proud of what she achieves despite her epilepsy. Good on her! But she is still not happy about and cannot celebrate having epilepsy.
I know a dad of a child with a rare epilepsy, who cares for and gives his child and his family hope through charity work. He’s constantly exhausted and I don’t know how he copes. He’s amazing and he deserves a frequent pat on the back. He’s not happy that his daughter has epilepsy, could not ever celebrate it, and the very idea of such is bizarre and almost offensive to him.
A friend of mine without epilepsy has no medical conditions but faces ongoing challenges at work because of the culture. I respect him as I do the three aforementioned people. He does worry about me sometimes. He’s not happy about epilepsy either.
Key points
If you find a way to live, through the struggles you face, then seriously, high-five. This can be to people with epilepsy, learning disabilities, amputees, etc., AND people without any medical conditions.
Yes, let’s celebrate differences (and similarities!) if, they are positive. Let’s support and encourage each other when doing well.
However, I’m not proud to have epilepsy. The idea of such, to me, is nuts.
What do you think? Have you ever struggled with similar statements to that of John?
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Torie Robinson
Keynote Speaker, Podcaster, Epilepsy Sparks CEO, Editor, Writer, et al.
*Note: I’m not, nor should anyone ever will be ashamed to have epilepsy