Why You Need to Meet Other People With Aphasia

During a recent chat, we asked people if they knew other people with aphasia. Only 11% said they didn’t know anyone else with aphasia, while the rest listed friends met through clinics or support groups (47 people), family or friends (20 people), community (7 people), or an online chat group (18 people).

What was more interesting was what happened when we asked people if they knew other people with the same type of aphasia. In other words, if you have Broca’s aphasia, knowing other people with Broca’s aphasia.

While people with Broca’s aphasia overwhelmingly knew other people with Broca’s aphasia (13 people knew someone with the Broca’s and three people did not know another person with Broca’s), the inverse was true when it came to primary progressive aphasia. Only one person with PPA knew another person with PPA, whereas ten people with PPA did not know another person who had their type of aphasia. People with Wernicke’s aphasia and anomic aphasia both were more evenly split between people who knew others with their type of aphasia and people who did not.

Why Is it Important

We asked people why they thought it was important to know others with aphasia (and, ideally, to know other people who have the same type of aphasia). We then polled people during the chat to see how much they agreed with the reason and felt the same way.

To have a connection. It’s so hard now to have people understand you and why they can’t. —Molly (85% agreed)

It helps us to understand what issues we have and how to help us improve our thinking. I wanted to know how the stroke changed me with taste, smell, and speaking. —Bruce (93% agreed)

To be of support and encouragement to them —Trazana (93% agreed)

They don’t finish the sentence or thought. —Eric (82% agreed)

To see how they handle it. —Brian (92% agreed)

Share experiences and understanding. —Doreen (100% agreed)

Because we could have something to talk about. —Suzanne (92% agreed)

To advocate and educate. —Crystal (92% agreed)

Can try to talk without someone making fun of you. —Shawn (81% agreed)

To feel at home. To have a brother that shares the same experiences. —Ziv (83%)

I’m curious to meet other people. —RobertJenkins, JR (92% agreed)

Why do you think it’s important to know other people with aphasia?