The 'Double-Whammy' of Having Epilepsy Plus Other Health Conditions
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 of course there are 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 plus 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. Translation: I was going to die soon. Since he didn’t seem to want to do anything but watch it, I changed doctors. Under the care of Dr. Paul Richardson at Dana Farber Cancer Institute, I was put on a regimen right for a patient at my stage of its insidious progression, requiring only four infusions a year. The psychological upshot: my myeloma also sank into the upper limits of my subconscious, as I often didn’t think of it for over a week at a time. Now 15 years later, my myeloma remains stable, with my numbers no worse than they were when I was first diagnosed. And recently there have been research breakthroughs that may do away with the eventuality of death by myeloma for people such as me. I’m on the list for participating in an exciting clinical trial and thinking about it with joyous anticipation every day.
My thoughts of my particular double whammy were bound by suppression for many years. It’s hard to tell what this unhealthy behavior caused, but there’s no doubt I would have been better off acknowledging the disorders consciously. Now, having come out of hiding about my epilepsy, alongside a newly minted commitment to epilepsy advocacy, it’s become a major part of my life. When coupled with the brighter prognosis for the myeloma, I’ve been able to acknowledge these parts of myself in realistic ways. Bringing them to the fore feels like an overdue release, and I wish I hadn’t missed out on years without this healthier psyche.
It’s not easy having epilepsy and a second (or third, or fourth) condition. How do you deal with them without letting them get to you? Me? I stopped denying them, and I’d like to begin a discussion. Please give me and your fellow readers the benefit of your successes. Please post!
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Getty image by Victor Tongdee.