I'm blessed with being able to control my tonic-clonic seizures via meds. Nonetheless, I hid my condition for 36 years. Finally tired of the stigma against epilepsy, I began opening up, choosing moments (ideally somewhat casual ones) to tell people I knew well of my epilepsy.
The stigma against epilepsy is culturally based, as well as a product of ignorance. It's up to us, through open discussions and teaching others, to change the perceptions about epilepsy, do away with the stigma.
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It was time for me to shed the light on my epilepsy...
In 1976, I experienced my first seizure.I was in my high school hallway between
classes (read: teens all around),
having felt all morning as though I was disconnected, somehow reading
everyone’s minds.What an aura.
The next thing I knew I was in the Concord, NH, hospital,
while they tried to determine if I was “an epileptic.”And so began my feeling of being the other,
of being weird, and of humiliation. My cognitive abilities just weren’t what they used to be.Was it the epilepsy or the Phenobarbital?Regardless, it was me, and I was less of a
person to my way of thinking.
Fairly soon, I moved onto more effective meds, which allowed
me control.My self-esteem stayed
damaged, though, and, like so many, I hid my condition. I only dealt with it when I would forget to
take pills and have a full-out grand mall seizure – usually with people who
didn’t expect it because, that’s right, I hadn’t told them about my epilepsy.
What a waste.Not
only was I in a dangerous part of the shadows, I wasn’t handling the root of my
problem, the stigma.Furthermore I was
missing out on an opportunity to help many others’ find their way out of their uneasiness
about epilepsy by giving them the information they need to view it realistically.
As time went on, I had seizures every few years, but only
when I forgot to take my meds.Because I
was covering up my epilepsy, I hadn’t told people around me at work or even
good friends that I have epilepsy.It
was a shock to all when I had seizures.And I owe apologies for having put the people who spent so much time with me through my tonic-clonic episodes without alerting them and coaching on how to respond.
Growing weary of my self-diminishing secrecy, I decided it
was time for a change, but only after 36 years had passed. What a waste it had been. I looked for opportunities to tell others with
whom I had established relationships that I have epilepsy, how common a
condition it is, and how to help someone having a
seizure. I found openings when asked
what my medical bracelet was for and waited for other appropriate moments to
begin spreading the word.
It got easier and easier, and a common belief began to bear
out:The stigma against epilepsy
partially lies in others’ fears.I could
see many of their bodies clenching when I initially told them.However,as I spoke to them and they learned facts —especially about what to do
if a tonic-clonic seizure strikes – they began to ease.Granted, these may be especially open-minded
people, but it did bolster my courage to continue on.And I’ve found that almost all those I’ve
told haven’t let me down.
I'm blessed with being able to control my tonic-clonic seizures via medication. Nonetheless, I hid my seizure condition for 36 years. Finally tired of the stigma against epilepsy, I said "no" to staying in hiding, choosing apt moments (ideally somewhat casual ones) to tell people with whom I have an established relationship, of my epilepsy.
The stigma against epilepsy is culturally based, as well as a product of ignorance. It's up to us, through our open discussions and abilities to teach others about this not-so-rare condition, to start to change the unfounded perceptions about epilepsy, do away with the stigma.
For the good of you, for the good of all, we need to speak the truth.
If you want to get in touch to talk about the ideas on this blog, please don’t hold back. You can reach me at @LightEpilepsy or email@example.com. I look forward to hearing from you!
We’re the lucky ones.Our epilepsy is controlled with meds and we live full, productive lives,
only very occasionally – if ever – interrupted by seizures.Our epilepsy even may be invisible to you.
please don’t be surprised when I tell you that I schedule my days according to
the ebbs and flows of the meds that keep me running on time.
When I wake up, I’m at my best.I haven’t taken carbamazepine and lamotrigine
for eight hours, but there’s still a therapeutic level in my bloodstream.I schedule my most important meetings in the
morning when I’m clear-headed before taking my first dose. Morning: Whoosh.There goes that first mega dose.It hits, and I have to be seated and try not to put myself in a position
in which I have to say anything important.If I bend my head down, I’ll go toxic and need to lie down for over an
hour.If I take my Vitamin C, my blood
will rush a little, and I’ll also go toxic.Lunchtime: One tab of lamotrigine?Not so bad.Evening: I take another,
I look up into all the faces – the concerned, the horrified,
and the ones rushing to lift the stretcher. “I’m sorry,” I mumble.And then I lose consciousness again.
I’ve just had a tonic clonic seizure, and I’m embarrassed
and overwhelmed by the fact that I’ve caused so much trouble.I know.I know.It’s not my fault that I
have epilepsy, though the “I deserve its” of adolescence still creep in from
time to time.Nonetheless, I feel I must
apologize. But what am I apologizing for?Is it that I have epilepsy or something else?
Here’s where I squint, trying to find
the source.My seizure definitely has
been an inconvenience, both for others and me, and it’s scary, especially for
those who don’t know I have epilepsy.I
forgot to take my meds, which is what led to all of this trouble.I need to apologize for that, but I also
should apologize for not having told some of the others that I have epilepsy
and instructed them on how to deal with it.
Rationally, I’m clear on what should be the bases of t…
How do you feel when you have epilepsy and [fill in the blank]?We often hear about “co-morbidities” (does anyone else hate that word?) with psychiatric disorders, cognitive disorders, migraines, and sleep disorders, but there are, of course, others. Nonetheless, we with epilepsy may live with entirely unrelated conditions that affect our quality of lives and fear levels. How do we handle it all? I have epilepsy + smoldering myeloma (symptomatic multiple myeloma) and in no way can I be viewed as a model of how to deal with both of them, especially together. My solution: Denial. For many years, I hid my epilepsy, took my meds by rote, and pushed down acknowledging epilepsy until I no longer heard my thoughts banging away at my consciousness.I didn’t accept them, and, as my seizures are controlled with my meds, it was pretty easy to do so for many years. And my myeloma? When it was first diagnosed in 2003, my oncologist told me that I should begin getting my affairs in order – transla…