How does living with a disease no one can see affect us?
The outward-facing piece of my illness is a tiny spot on my forehead that only the most discerning eye could pick out.
My skin dips in a little near my hairline for about one-half of a centimeter, like a place on the Moon that was carved out by the smallest crater ever.
Only I see it, but I’m grateful there is a physical sign. It feels like proof that I have gone to dark places and fought hard battles.
I obtained this little bump when the cement-like glue that is used to put electrodes on the head got a little too stuck to my skin and took some of me with it in the removal process.
What You Don’t See
We call epilepsy and so many other chronic illnesses “invisible illnesses” for a reason.
You wouldn’t know by looking at me that it took 10 years and just as many medications, including the hellscape that was the Ketogenic Diet at age 14, to get my seizures under control.
You wouldn’t know that I still need my Mom to go to get blood drawn with me because of how early and often I was exposed to needles.
Some of my medications had side effects you could only find by doing a blood test, like drug-induced lupus that I lived with for a year.
You wouldn’t know how lonely it was to live with epilepsy. You wouldn’t know how many specialists have diagnosed me with things I don’t have- gout? really? You diagnosed me with gout from one 20-minute ER visit for extreme vertigo? Hmmm. 2+2 does not equal 3.
You wouldn’t know how lonely it is to live with epilepsy that’s in remission.
I have trouble articulating how weird it is to have epilepsy but to drive. To be able to live alone if I so choose. I traveled out of the country for six months and I would do it again.
I have to worry a little bit extra. Largely, I live like I didn’t go through ten years of never-ending tests, medication tapering, and the humiliation of not feeling self-sufficient. I feel blessed, and it feels odd.
I never tell anyone that I have epilepsy. Especially now that I don’t actively seize, it rarely comes up naturally.
So the two of us are joined at the hip, not needing each other, but knowing the other is there.
You wouldn’t know how much I hate being pitied.
I have had so many interactions that go like this:
Person A: So how are you?
Me: I’m good, *details about life, etc*
Person A: That’s so great to hear, especially after all you went through with your disease..
Me: *sudden urge to run away*
I Am Not My Illness
If I ever get up the courage to speak my mind to someone’s face, I will say an iteration of this:
“ My “disease” does not define my life. I am not doing well because I don’t have seizures anymore. I am doing well in spite of all that I went through. I would be thriving if I was still having seizures. If you haven’t noticed, I am a strong, resilient woman.
So thank you for the well-intentioned expression of goodwill, but I don’t want what seems like pity, and I don’t want you to feel happy for me on the condition of “all that I want through”.
YOU did not stay up late watching Wife Swap with me when I was sleep-deprived on purpose to try and induce a seizure.” (thanks, Dad. Dad did watch Wife Swap with me).
Turning The Bad Into Good
What still drives me up the wall today is how many people don’t understand epilepsy, don’t know what it is, or still hold on to stigmas.
Please don’t think I’m going to swallow my tongue during a seizure.
So to merge my passion for advocacy with my passion for writing, I’ve started this blog
Let me just say, building a website is hard. It is a work in progress, but I am proud of myself.
I’m going to be writing educational pieces, personal anecdotes, medication reviews(Keppra-rage is real, people), and hopefully reaching a niche of people who care about epilepsy and the chronic illness experience while also improving my blogging skills.
If you are one of my email subscribers, you will probably start getting more stories about epilepsy in your inbox. I have to get my traffic from somewhere, and I will be reposting on Medium.
Fear not- I will keep writing about the incredible variety of subjects you love.
I’m excited for this next part of my journey and grateful that I am able to expand and grow in my writing skills with such an amazing group of writers and readers.