The silent stigma of stroke

Your brain is the body’s master controller, regulating all systems to keep it in balance. It controls how you move, feel sensation and emotions, as well as how you communicate through your thoughts, speech, body language and personality. However, when a stroke injures the brain, it may affect any of these abilities. Some changes are common regardless of which side of the brain the stroke impacted. Other changes are based on which side of the brain the stroke injures. Either way, a stroke survivor often is faced with multiple sudden changes and challenges to the life they knew before their sudden brain attack.

With all this change at once, there is no surprise that there will be emotional effects of stroke to deal with as well. This post is here to walk you through what those might look like for different stroke survivors and discuss what you can do to start feeling better. 

Why might stroke survivors experience emotional changes? 

Initially, some emotional stress often accompanies the physical challenges of stroke, such as sudden loss of voluntary movement in an arm or leg, loss of speech, or cognitive disturbances. This stress might be compounded by financial strain. Stroke survivors might fear a loss of income or worry about their ability to support their family or pay for new acute- and long-term medical expenses. Furthermore, trauma from the stroke can affect the entire family, with stroke survivors possibly losing some independence abruptly, just days after their brain attack. This emotional strain to family members, who might have suddenly become full time caregivers, often goes unrecognized as well. 

Unfortunately, these sometimes silent mental struggles of stroke survivors are often overlooked in the acute care phase, as the focus is primarily on physical, mostly mobility related, impairments. When left untreated, however, these emotional difficulties might manifest in mood disorders that can interfere with stroke rehabilitation outcomes and, in severe cases, lead to mental health crises, including suicidal thoughts. If this happens to you, seek immediate assistance from mental health crisis services, your nearest ER, or by calling 911.

Stroke survivor: You are not alone

It is important to know that you are not alone in experiencing emotional effects during your stroke recovery. Most stroke survivors report various emotional challenges in the aftermath of their stroke and throughout different stages of recovery.  Your brain was under attack, after all, and it requires time to help it heal, both physically and emotionally. 

What are some emotional challenges stroke survivors might notice?

Emotional difficulties commonly reported by stroke survivors include: 

• Depression
• Anxiety
• Apathy and lack of motivation
• Frustration, shame, anger and sadness
• Pseudobulbar affect (also called reflex crying or emotional lability). This is when your emotions change rapidly and do not always match the mood or situation appropriately. These personality and mood changes are a result of the stroke’s neurological and biological effects.  
• Denial of the changes caused by the brain injury in order to hide from the public stigma of stroke

What can stroke survivors do to start feeling better if they’re emotionally struggling?

Fortunately, there are many effective behavioral interventions that can address your mood symptoms. First, it’s important to recognize that your brain is in the process of healing and that seeking help can allow your brain to do so more effectively. Many survivors initially report finding the emotional burden to be heavy. But, through both professional therapy and joining support groups, they’ve found hope through sharing their stories and helping other survivors in their healing journeys. 

In several recent episodes of the Know Stroke Podcast, we addressed some of these silent emotional effects of stroke with our guests, highlighting how they’ve discovered inner strength and resilience after their strokes. In Episode 48, “Let’s make it okay to say you’re not okay”, we spoke with Tim Whitmire. Tim is a stroke survivor and co-founder of F3, the largest men’s fitness movement in the US. He shared how the model of fitness, fellowship, and faith supported his recovery after stroke. He and show co-host David Dansereau opened up about how finding community again with their peers helped them both  in their healing from and their fight with post stroke depression.

In Episode 50, “A Survivor’s Voice for Stroke Awareness & Policy Reform,” we spoke with stroke survivor and US Senator Ben Ray Luján of New Mexico.  A key topic we covered was reducing the silent stigma around stroke. Since his stroke, Senator Luján has advocated for open conversations, and embarked on public awareness campaigns to share the personal stories of stroke survivors in order to dispel misconceptions and foster a supportive environment. He shared a touching story with us about a reporter who had previously hidden in silence “to avoid the stigma of stroke.” However, after hearing Senator Luján open up and share his story, the reporter confided in him and then went public with his own stroke. 

Concluding thoughts

We hope this article helps you understand the emotional effects of stroke by highlighting a few stories of the lived experiences of other stroke survivors whom we have interviewed. Our goal in writing this guest post was to educate and reinforce the message that survivors may experience depression and/or anxiety following stroke. Please note that while many different mood disorders can be intertwined, they present with different symptoms and should be diagnosed by a qualified medical professional.

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About the Know Stroke Podcast 

Created and co-hosted by David Dansereau (stroke survivor) and Michael Garrow (stroke caregiver). We get you caught up on the latest stroke science and bring you interviews with renowned stroke experts. Our guests are leading the way in cutting edge stroke rehab technologies and work in the top rehabilitation hospitals and rehabilitation research facilities worldwide. Our mission is to unite the stroke survivor and caregiver community and target advocacy to change to the stroke care pathway across the globe. 

Tune in on your favorite podcast player to learn what our experts believe will shape the future of stroke prevention and recovery. 

Disclaimer: The information shared on the Know Stroke Podcast do not constitute the practice of medical advice, diagnosis or treatment. Always talk to your health care provider for diagnosis and treatment, including your specific medical needs. If you have or suspect that you have a medical problem or condition, please contact a qualified health care professional immediately. If you are in the United States and experiencing a medical emergency, call 911 or call for emergency medical help immediately.