To be clear, we can’t actually experience aphasia unless we have it. By dipping our toe into what living with aphasia is like, we may gain insight into strategies that we can use to help make communication easier for everyone. Below, I share videos in which people with aphasia share their experience. You’ll also find 4 ways to experience aphasia-like symptoms yourself.
Free DIRECT download: Experience aphasia (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Outline:
- What is aphasia?
- How are people with aphasia treated by others?
- Why experience aphasia for yourself?
- A day in the life, with and without communication aids.
- Experience aphasia with these interactive simulations.
- A real-life example of fluent aphasia.
- And here’s an example of non-fluent aphasia.
- See the social impacts of aphasia.
- A graceful reaction to rudeness.
- Teenage stroke survivor records yearly updates.
- Artist paints how she sees her world.
- Experience aphasia with these interactive simulations and activities.
- Learn how you can be supportive in conversation.
- Related Eat, Speak, & Think posts.
What is aphasia?
Aphasia is an acquired communication impairment.
‘Acquired’ means you’re not born with aphasia. It’s something that happens to people after a stroke, brain injury, or a neurological disorder called primary progressive aphasia.
National Aphasia Association. (2018, May 28.)What is Aphasia? YouTube.
Aphasia can affect any area of communication: talking, understanding speech, reading, or writing. Impairments can range from mild to profound.
People with aphasia may or may not also have related conditions, such as:
- Difficulty pronouncing words (dysarthria)
- Trouble sequencing and coordinating speech sounds (apraxia of speech).
- Cognitive problems, such as impaired attention, difficulty regulating emotions, and impulse control.
Aphasia may disappear soon after onset, but for many people it is a chronic problem that affects every area of life.
How are people with aphasia treated by others?
People with aphasia have to deal with:
- Stereotyping (others assuming they are mentally impaired or drunk).
- Rudeness (people walking away or hanging up on them).
- Patronizing (treating the person like a child).
- Isolation (avoiding talking to them).
Regaining lost communication skills can take years. And even though a person may improve from year to year, they may never communicate like they did before a stroke.
Depending on how impaired a person is, this means that every single communication attempt may be very challenging, difficult, incomplete or slower than normal.
Every time. Every single day.
So it’s easy to see how people who communicate fluently can become frustrated with people who have challenges.
And, naturally, it’s very easy to see how people with aphasia may become frustrated, discouraged, or depressed.
Why experience aphasia for yourself?
We can’t truly know what it’s like to have aphasia, unless we have the condition ourselves, but we can try some interactive activities or watch some videos to gain a sense of what it might be like.
By listening to what people say about having aphasia and trying some activities that may simulate some of the symptoms, we may:
- Deepen our understanding of the barriers and frustrations.
- Learn simple strategies that can make a big difference in a conversation.
- Develop the ability to offer more patience and kindness when talking to someone who has aphasia.
Trying to gain a tiny sense of what it’s like to have aphasia can be a powerful way to change how we think about it. Continue reading to find resources that can help provide this experience.
A day in the life, with and without communication aids
This is the most powerful video I have seen in terms of showing what it’s like to live with aphasia.
Watch this woman go through a typical day without being able to communicate effectively. She encounters many problems, including overcooking her breakfast in the microwave, not being able to shop or order in a cafe, not being able to communicate with friends or her child, and allowing a salesman to bully her into signing a form she doesn’t understand.
Her husband takes her to a speech-language pathologist, who teaches solutions for her problems.
Then watch her go through a similar day with the same scenarios, but this time she has has access to some simple but clever visual aids. Her friends and family have learned how to offer helpful support for her situation, the cafe created a visual menu, and she sends that pushy salesman on his way.
By the way, I’ve been a speech-language pathologist for a good number of years, and I learned some good ideas from this video.
A real-life example of fluent aphasia
Fluent aphasia is also called Wernicke’s aphasia. In fluent aphasia, people speak in connected sentences, but they don’t necessarily make sense. People with fluent aphasia often also have impaired understanding.
And here’s an example of non-fluent aphasia
Non-fluent aphasia is also called Broca’s aphasia. This gentleman, Mike Caputo, is one of the founders of Voices of Hope for Aphasia.
See the social impacts of aphasia
Nicholas suffered multiple strokes after a terrible road accident. This is a very moving and beautiful video showing the social and emotional side of aphasia.
A graceful reaction to rudeness
When asked what it’s like to have aphasia, this woman’s first point is that strangers think she is intellectually impaired.
Teenage stroke survivor records yearly updates
Sarah Scott experienced a stroke at age 18, likely due to an undiagnosed hole in her heart. She has been uploading a video to YouTube every year, to share her progress and challenges.
In her earliest video, you can see her slow, halting speech. She has frequent failures to communicate her ideas. She has her notebook handy, which helps her to find her words sometimes. Joanie, her mother, provides support for her during the conversation.
Let’s jump ahead to her 2025 video update, 16 years after her stroke. Sarah is now married with a baby and working. Her communication skills are so much improved! Even though she is able to talk quite well, she still has word-finding difficulties and other communication challenges. She raises awareness about aphasia and money for “Say Aphasia”.
Artist paints how she sees her world
Deonna Keiser, an artist, uses drawing to help communicate because she has non-fluent aphasia. She even literally painted how she sees the world after her stroke and took a picture of it to show her doctor.
Experience aphasia with these interactive simulations and activities
These activities try to simulate a language impairment in various ways. As you try them, notice if certain strategies might make it easier for someone with this difficulty.
For example, how might slowing down, asking for repetitions, seeming demonstrations or visual aids, or having written text help? Would conversation about a familiar topic be easier than one about something new?
- Voices of Hope for Aphasia has four sets of interactive simulations of what it’s like to have aphasia. Try your hand at listening, reading, writing, or speaking with aphasia. Also available in Spanish.
- Find an instructional YouTube video for an activity like origami, drawing, tying a knot, or something that doesn’t involve sharp or dangerous tools. Increase the playback speed to the fastest available speed. Try to follow along and either do the activity or take notes. Is there a difference if you don’t look at the screen? Or listen to this cooking lesson in Welsh. Imagine if this is how English sounded to you after a stroke!
- Change the language of a movie or show (or mute it and put on subtitles in a language that you know a little). Can you follow what’s happening? Can you multi-task while watching or listening to it?
- Do you know how to say ‘hello’ in another language? When you hear someone else using that language, try greeting them in that language (if appropriate). If possible, try asking for directions or for the time. How did you feel before, during, and after the conversation? Were you successful? How did the other person respond?
Learn how you can be more supportive
- 10 tips from the Mayo Clinic.
- 7 communication tips for acronym ‘APHASIA’ from the National Aphasia Association.
- Free course to improve conversation skills from University College London (one for general public, one for professionals).
- Free introduction to Supported Conversation for Adults with Aphasia, from the Aphasia Institute.
Related Eat, Speak, & Think posts
- Free low-tech AAC for adults.
- How to shape words from numbers to improve speech.
- Improve aphasia outcomes by creating intensive home exercise programs.
- How intensive home exercise helped my patient talk again.
Free DIRECT download: Experience aphasia (patient handout). (Email subscribers get free access to all the resources in the Free Subscription Library.)
Featured image by Mediamodifier on pixabay.
Lisa earned her M.A. in Speech-Language Pathology from the University of Maryland, College Park and her M.A. in Linguistics from the University of California, San Diego.
She participated in research studies with the National Institute on Deafness and other Communication Disorders (NIDCD) and the University of Maryland in the areas of aphasia, Parkinson’s Disease, epilepsy, and fluency disorders.
Lisa has been working as a medical speech-language pathologist since 2008. She has a strong passion for evidence-based assessment and therapy, having earned five ASHA Awards for Professional Participation in Continuing Education.
She launched EatSpeakThink.com in June 2018 to help other clinicians be more successful working in home health, as well as to provide strategies and resources to people living with problems eating, speaking, or thinking.
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