13 Things Every Stroke Survivor Wished You Knew

Only a stroke survivor can truly relate to another stroke survivor. But that doesn’t mean that everyone else needs to feel like an outsider.

In this article, you gain insight into what every stroke survivor wished you knew about stroke recovery. The more you understand, the more you can help a loved one in recovery. If you are a caregiver, it’s important to educate yourself about stroke recovery so you can be a resource and offer support.

You can educate yourself about rehabilitation methods to help your loved one recover. You also may want to increase your awareness of how to be a positive encouragement for their road to recovery.

What to Say to a Stroke Survivor

If you’re wondering what to say to a stroke survivor or how to cheer up a stroke survivor, remember they are the same friend to you they were before the stroke. Use empowering language like the term survivor.

The term ‘stroke victim‘ has a negative connotation. Terms like ‘stroke survivor’ or even ‘stroke warrior’ indicate the individual’s capacity to overcome a challenge. A friend with a stroke will become a warrior during the rigors of rehabilitation!

To help you understand how to speak and interact with your loved one, we’re taking the lead from Jill Bolte Taylor – a stroke survivor and neuroanatomist. She has one of the most-watched TED Talks of all time, as she tells the life-changing story of her stroke from the perspective of a neuroanatomist.

You can watch her TED talk here:

What Every Stroke Survivor Wished You Knew

In Jill Bolte Taylor’s book, My Stroke of Insight (which is one of our top stroke recovery books), she shares tips on how to talk and relate to someone who has had a stroke.

Here’s some of the best advice:

1. I am not stupid, I am wounded. Please respect me.

Stroke does not affect someone’s intelligence.

A stroke is a “brain attack” that deprives an area of the brain of oxygen-rich blood. The damage left behind can impair different skills, like language and speaking or movements depending on which area had the oxygen deprivation.

This does not mean the stroke survivor has lost intelligence. Rather, it means they might need more time to find the right words.

Do not shout. Do not yell. They can likely hear you just fine, but need your patience.

In fact…

2. Be as patient with me the twentieth time you teach me something as you were the first.

Stroke recovery means relearning some basic skills. Many stroke survivors feel like they’re a child again, learning everything as if for the first time.

You would not grow impatient with a child if you were teaching them how to ride a bike for the first time, so don’t grow impatient with your loved one either. It takes many repetitions for the brain to respond and for the survivor to discover how to perform tasks again.

3. Protect my energy. No talk radio, TV, or nervous visitors.

During stroke recovery, the brain needs the right kinds of stimulation to heal itself. But it does not like too much noise, lights, or overstimulation.  In fact, what every stroke survivor wished you knew is that they would like their surroundings to be as relaxing an environment as possible.

For example, the stimulation of doing hand exercises is good. It helps the brain rewire itself and improve hand function. But the stimulation of background noise only drains on the limited energy that their healing brain has.

This is one of the reasons why mindfulness is important during stroke recovery. Limit as many unnecessary distractions as you can.

4. Make eye contact with me. I am in here – come find me. Encourage me.

If someone avoided eye contact with you, you might feel upset, annoyed, and even hurt. Everyone feels that way, including stroke survivors.

In this light, you don’t need to worry about what to say to a stroke survivor. Instead, focus on how to say it. Use eye contact. This is especially critical if the stroke has impaired their communication abilities. A lot is communicated with body language and eye contact. Your care for them is a big encouragement.

5. Do not assess my cognitive ability by how fast I can think.

After a stroke, the brain is busy rewiring itself through neuroplasticity. During this process, the healthy areas of the brain learn how to function for the damaged areas – and this takes time.

While the brain is working to heal itself, it may take a survivor additional time to retrieve information. This does not mean they have lost their intelligence. It only is an effect of the brain working overtime.

Your survivor may simply experience a delay in gathering information because of how hard their brain is working to heal.

6. Repeat yourself – assume I know nothing and start from the beginning, over and over.

As the brain heals from injury, it requires more energy to retrieve and relearn incoming information.

So, when a survivor has a hard time understanding you, take the time to provide information in smaller steps. What every stroke survivor wished you knew is that they just need things to slow down while their brain is recovering.

So, repeat things and please be patient while you do it.

7. Stimulate my brain when I have energy, but know that small amounts may wear me out quickly.

It’s perfectly normal to require more sleep after a stroke. Survivors may find themselves wanting a nap immediately after rehab exercises or even right after getting ready in the morning.

Tasks that once were effortless may require a tremendous amount of effort now. Remember, the healing brain requires frequent rest periods to rewire!

Stimulation is good (like with stroke rehabilitation exercises at home), and sleep afterwards is often necessary for recovery too.

8. Please don’t raise your voice. I’m not deaf; I’m wounded.

When a stroke survivor asks you to repeat yourself, they probably just need more processing time, they are not hearing impaired. They do NOT want you to repeat yourself louder, unless they ask.

Saying something louder is not going to help them process it better. Patience, compassion, and slowing down your speech are more effective ways of boosting communication.

9. My desire to sleep has everything to do with my healing brain and nothing to do with laziness.

Stroke causes damage to the brain that must be healed. Just like a broken leg requires time and energy to heal, so does the brain.

When a stroke survivor desires sleep instead of doing something “productive,” it’s not because they’re being lazy. It’s because their brain is healing and requires rest to recover.

10. Please have patience with my memory.

Depending on the location of a stroke, memory can be affected. The common areas for stroke do not usually impact memory or cognition, but since a person can have a stroke anywhere in the brain, their memory can be impaired. Cognition, short-term and long-term memory can all be affected.

If a loved one doesn’t remember something that you told them a month/day/hour ago, please don’t take it personally. Be kind and patient with their recovery.

11. When I’m “stuck,” try not to take over.

During stroke recovery, a little coaching or suggesting can be helpful for a survivor. Taking over and doing something for them is NOT always helpful. Constantly doing everything for a survivor puts them at risk of a phenomenon called learned-nonuse.

Essentially, functions that you stop using will eventually become completely lost as the brain lets go of unnecessary functions (i.e., functions it thinks are unnecessary because you’re not using them).

Movement is key to recovery, including attempts at failed movements, so avoid taking over until some effort has been made by the stroke survivor. Instead, help your loved one accomplish tasks with good form and safety.

What every stroke survivor wished you knew is that their “stuck” point is right where the brain is working hard to figure out how to get something done.

12. I’m not being ’emotional.’ I’m recovering.

Try to be compassionate if your loved one displays emotional changes. Sometimes, stroke can affect the parts of the brain that control emotions and, therefore, affect a survivor’s ability to manage their emotions. This is a condition called emotional lability.

Also, a stroke creates sudden life changes for a survivor. Meaningful activities like hobbies and jobs may be lost. It is natural to have emotional responses to these kinds of losses as well.

Put yourself in the shoes of a stroke survivor. If everything suddenly changed, and you had no control over it, you would feel deep emotions too. Have patience as your loved one is processing these emotions.

13. I need you to love me, both for who I have been, and for who I might become.

During stroke recovery, the goal is usually to get back to “normal.” However, for many stroke survivors, there is a “new normal.” There are many emotional, behavioral, and even personality changes that can occur after stroke. Sometimes, the changes go away. But other times, these changes remain. What every stroke survivor wished you knew is that they need help to accept these changes.

Together, you can both find acceptance for the here and now. Caregivers should support their loved ones in finding this acceptance. You can help by cherishing your loved one for who they are now, instead of what was in the past. Together, you can embrace the future.

If you want more ways to help a loved one who suffered a stroke, check out the book Healing & Happiness After Stroke. It’s all about the emotional side of recovery, which is just as important as the physical side.