This week we hear from Columbia resident Rene Powell. She spoke with her friend Traci Wilson-Kleekamp about what life has been like with a disability and how things have changed as her disabilities became more visible.
Missouri Health Talks gathers Missourians’ stories of access to healthcare in their own words. You can view more conversations at missourihealthtalks.org.
Rene Powell: I was sort of born stubborn. I have been told that a time or two that I was a little bit of an oppositional toddler and child.
Traci Wilson-Kleekamp: No way.
Rene: But my Mom has told me since then that she really appreciated that aspect of my personality when she saw how much it helped me pursue the healthcare I needed because that was a challenge.
Traci: I don't know how invasive it is to ask about insurance and how that works and getting the right doctors - How did that work?
Rene: Well, I was really very lucky that there was an epileptologist [doctor who treats epilepsy] that he accepted Medicare and Medicaid because that was my only insurance option.
I knew the phrase “pre-existing condition” from a very early age because I knew I could not buy insurance, except for a very expensive policy.
So at first it was because my medicine was $50 a month, and I could do okay, and then later on when I started having a lot of emergency room trips and switching to newer medicines, it got to be a whole lot more expensive.
Traci: So what kind of barriers did you face because of all of this happening to you?
Rene: Well, one interesting thing is I don't consider my health itself to be a problem. It's my body doesn't cooperate with me.
Rene: Necessarily. It doesn't do what I - Or it does things I don't tell it to you, as far as tensing my muscles up.
Traci: Okay. Involuntary movements.
Rene: And so physical access has become an issue.
Rene: And also visibility. The epilepsy was not noticeable unless I had a seizure. So they're two very different experiences.
Traci: Tell me how those two - the visibility part - how it affects you? And the physical part?
Rene: Well, it is very different in that there are things that I'm discovering that I've been told about. I sort of figured out now that's what that pity stare looks like.