Do You Become Invisible When You Have Aphasia?

In Kelly and Brad Marsh’s new book, Love Stroke, Kelly describes herself as turning invisible during conversations after her stroke. She would be there physically, but people would direct all of their questions and comments at Brad. Her aphasia had made her figuratively invisible, a ghost in conversations that were all about her.

We’re talking today about invisibility in this latest installment of our online book club.

Going Invisible

Kelly describes the phenomenon on page 101 when discussing the Halloween she attended after her stroke:

The best way to describe it is a phenomenon in which you are the center of attention or one of the main attractions of other people’s concern, discussion, or visual attention, but they all operate as if you aren’t even there.

People would walk up to Brad and Kelly and direct their questions and concerns about Kelly to Brad. She explains, “They talked to each other, and they all talked to Brad about me … It was as if I weren’t sitting right there in front of them” (p. 100).

Invisibility in social situations becomes one more thing that Kelly needs to overcome during her recovery.

Making the Invisible Visible Again

Kelly recommends gently speaking up. She often interjected, “I’m here. You can talk to me” as a reminder to people in the conversation that she could answer the same questions, albeit in a way due to her aphasia.

It’s also okay to give people a few tips, either spoken or on a card that you can hand over during the conversation. For instance, you could say, “Let me answer that. You’ll just need to give me time to form my words due to my aphasia.” Giving that information clues the other person in to the speed in which the conversation needs to unfold.

Kelly also enlists Brad to redirect the conversation. On page 102, she states, “Brad would point people to me when they would ask about me in front of me. Eventually, people figure it out, but it’s hard, as they want quick and detailed responses, which are impossible. They need to save all the medical questions for another time and be happy just seeing and spending time with the survivor.”

In other words, change the subject matter so the conversation is inclusive to everyone in the group. You can save the medical facts and detailed explanations for another time.

More Tips to Combat Invisibility

You can also encourage people to get down at eye level if the person with aphasia is in a wheelchair or seated. It’s difficult to have a fair and equal conversation when most of the group is standing and one person is sitting. If all parties are at the same eye level, they’ll hopefully direct their comments to every member in the conversation.

While Kelly is speaking about her experience after a stroke, the same phenomenon applies to aphasia after a traumatic brain injury or the neurological disorder primary progressive aphasia. In a world driven by words and conversations, people need to learn new communication skills when conversing with someone with aphasia.

Have you ever encountered this invisibility phenomenon? How did you combat it?

Join this online book club! Purchase copies of Love Stroke at any online book retailer including Amazon.

Image: Garann via Flickr via Creative Commons license