what do you wish people knew about aphasia

What Do You Wish People Knew About Aphasia?

When we originally asked this question during a chat, the same type of thoughts kept coming up over and over again. During the chat, we shared how many people said something similar and went into each thought more in-depth. Think of these statements as “themes”—the types of things we would like people to know about aphasia, even if the way we say them differs slightly due to personal experience.

Before we tell you how the chat attendees voted, we want to gather YOUR thoughts. We will be sharing all the results in a post.

The Themes

These are the seven statements that kept coming up on the chat. We want you to weigh in, too—do you agree that the statement is an important thing for people to know about aphasia?

Theme 1: We are still the same inside, but it is hard to express our thoughts outside (Mark).

In other words, aphasia may change your capabilities, but you are still the same person inside.

Theme 2: My answer may be slower than expected (Brian).

Many people wished that people knew to slow down the conversation—either in how long it took to process the words or how long it took to say them.

Theme 3: It’s frustrating (Jill).

Many people wanted the general public to know how frustrating it can be to experience aphasia.

Theme 4: I wish family and friends understood the daily challenges for a person with aphasia (Geary).

Some people wished family and friends remembered that they were still dealing with aphasia, even after physical scars healed.

Theme 5: The way aphasia operates is not consistent for me on any given day. Factors influencing speech can be whether you are tired, sleepy, anxiety level, etc (Azlynda).

It’s important for people to know that aphasia may present differently at different times. If a person is stressed, they may have more difficulty communicating. Moreover, aphasia presents differently from person-to-person, and even day-to-day for the same person.

Theme 6: A stroke can happen to anyone (Lester).

Because a stroke (or head trauma or primary progressive aphasia) can happen to anyone, it means aphasia can happen to anyone. No one is immune.

Theme 7: It gets better (Mike).

How you feel on the day of your diagnosis is not how you feel many days into the future, even when you have a progressive form of aphasia. Emotions change because aphasia is a big shock.

Vote and Add Your Thoughts

Now it’s your turn to vote. We’ve added the themes below so you can weigh in on whether you feel the same way. (Even if you would have said it differently.) We are also collecting more thoughts for a larger project on what the community wishes the people knew about aphasia.

Vote whether you agree with the ideas below or have had similar thoughts, and then add your own unique words.

Comments

2 Comments

  • Julie welch
    July 1, 2020 at 4:09 pm

    I wish people knew that if they communicate with me on-line I can get across what’s really on my mind. I can say what’s hard or impossible for me for me to say.

  • Katherine Norris
    July 7, 2020 at 10:53 pm

    I totally agree! I tell people all the time, ” Text me, do not call me on the phone.”

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