Getting Family Support: Do They Understand Your Epilepsy?
Last updated: September 2023
Frequently, colleagues at my support group (and plenty of complaints in social media groups I watch) assure me that I'm not alone about getting inadequate support from my family. If a poll was taken, I'd wager the majority of people with epilepsy don't feel their families understand their aggravations as much as they'd like.
And before those people get too hard on themselves, I want to comfort them that they are not alone. I've recently taken an action that I hope will change my family's behavior.
My epilepsy medication has side effects
Since decades before I met my wife or had a girl, I've been on pharmaceutical "cocktail" mixtures of meds to the point I honestly don't know what I'd be like without them. People should understand that when medications are mixed for controlling epilepsy, their characteristics – both good effects and the bad side effects – multiply their potency.
I'll give 3 medications abstract values for the side effect of clumsiness, which is a leading side effect of all 3 in my current cocktail! Imagine that 1 has a factor of 2 for causing clumsiness, another has 3, and another has 4. It's possible that their combined likelihood of causing clumsiness is not 2+3+4=9, but rather, 2x3x4=20!
When my family pokes fun at me
My family loves weekend hikes, and I'll stumble nearly every outing. When it happened several times during a week at Yellowstone National Park – the worst being sliding about 15 feet down a rocky slope – they playfully referred to Dad's "rock 'n roll" in front of 30 others. My only injury was to my pride.
The worst my epilepsy's been was over a decade before I met my wife, so she's never gathered how dreadful that was – nor realizes the self-improvement I've made.
My comprehension is affected by epilepsy
My wife's a brilliant SAP IT systems architect with 4 degrees. My daugter is an 8th grader in several accelerated high school classes, and plays the violin and tennis. I'm envious of both their photographic memories and technical genius.
My medication slows my reading and lessens my comprehension, particularly for anything technical.
It gets aggravating
I half-heartedly joke that I probably have some kind of "fear of new technology" because of the reprimand either gives me when I accidentally push the wrong button on the TV remote and mess up our streaming.
One of them will fix it, at their convenience, and I'll ask them to show me what they did or to let me know what the passwords are and I'll write down the steps. Both have told me, "No point. You'll forget how to do it, anyway." But how can they expect to be spared my "annoying" them if they don't let me write it down for future occurrences?
We have plenty of fun times, but it gets aggravating to be the butt of all jokes.
I have other strengths, though
I'm as well-educated as my wife, and have been more extraverted than her. That means I know many more people than her if I need something from a handyman or simply a companion to watch a ball game with. It's been my openness to others that has kept me sane through all this.
They don't realize how remarkable that is since two of my medications are infamous for raging anger. But since I worked on anger management before either of them were in my life, they have no comprehension of the nuclear bomb I defused.
Does my family forget about my epilepsy?
Being 16 months seizure-free has been great, but it also means they take for granted that I have a problem. Aside from being unable to drive, my wife didn't think my complex-partial seizures could be so frustrating.
The only noticeable change she's witnessed in my side effects was losing 35 pounds after going off clobazam. And I've been on my current cocktail for most of my daughter’s life.
There have been some occasions when my daughter laughs, "I don't know why Dad puts up with us!" Each of them has commented that the other one shouldn't be so disrespectful of me after the other one just made a wisecrack about me. But they don't do that near often enough for their own advice to "stick" on the other.
Explaining my side effects clearly
Finally, a couple of months ago, I Googled for expert sources that listed the side effects of my medications in a brief sort of way that they could conveniently and clearly understand them. Then I cut and pasted the information on a document and hand-delivered each one a copy when they we were alone and wouldn't be distracted by the other's exasperation (or indifference).
I calmly explained that I have not been receiving the level of respect I see being paid to other fathers in public. I also told them to read the document.
Memory problems are part of my condition
I told them both that they needed to realize that my clumsiness, mistakes, and forgetfulness aren't a matter of lazy negligence that would deserve the amount of reprimand that each of them give me. Also, they both needed to realize there is a difference between poor short-term memory and a lack of intelligence.
If I was any less intelligent than them, why am I producing a TV series, organizing my team, and getting nationally-known guests? There is a difference between analytical left-brain thinkers and extraverted right-brain thinkers, and the world needs both kinds of people.
Old habits are hard to break. I am still the butt of impatience to help me with technical matters, but the tones of their voices are less irritated. There is a little more concern now if I "rock 'n roll," although the term is still used, and in public.
Hoping they learn more about epilepsy
And perhaps most helpful of all, I have put my daughter's computer skills to work handling the social media of my show about epilepsy, which is increasing her awareness of epilepsy.
I hope everyone can find a way to make their families more empathetic to their epilepsy.
Is increased screen time a seizure trigger for you?