According to the Centers for Disease Control and Prevention (CDC), someone in the United States has a stroke every 40 seconds, with 795,000 strokes annually. Stroke is a serious medical emergency, with the World Stroke Organization and other groups fighting a battle against this globally impactful disease.
Since stroke is such a universal experience, understanding what it’s like on the patient’s end of the stethoscope is extremely valuable information for nurses. This knowledge can actually increase empathy and improve care.
A Patient’s Experience of Stroke
Bill Gasiamis is an Australia-based author, podcaster, and stroke survivor whose valuable work supporting stroke survivors in their recovery spans continents.
Speaking about his stroke, Gasiamis states, “Experiencing a stroke was a life-altering event. It happened so suddenly, and the initial shock was overwhelming. One moment, I was going about my day, and the next, everything changed.”
He continues, “The physical challenges were immense. I had to relearn how to move and speak properly. Each step in the rehabilitation process felt like a triumph and a test of my patience and perseverance.”
“Emotionally, it was a rollercoaster,” Gasiamis admits. “There were moments of deep frustration and fear, especially with the uncertainty about my recovery and the possibility of another stroke. It wasn’t just about regaining my physical abilities — it was also about coping with the changes to my identity and daily life.”
“It made me reassess my priorities and find a new appreciation for the simple things in life,” says Gasiamis. “My relationships with family and friends grew stronger as they supported me. This journey also inspired me to become an advocate for stroke awareness and recovery, sharing my story to help others navigate their own challenges.”
Gasiamis adds, “While the stroke was a profoundly difficult experience, it also became a source of strength and purpose for me. It taught me resilience and the importance of living life with intention and gratitude.”
The Challenges of the Post-Stroke Journey
Recovering from a stroke is difficult on almost every level, and patients and their loved ones have much to tackle.
Reflecting on his experience, Gasiamis states, “The overall quality of my medical care and interactions with healthcare professionals was a mix of highs and lows. Initially, the emergency response was quick and efficient — the team acted promptly, which was crucial. Their expertise and swift action undoubtedly made a significant difference in my recovery.”
Gasiamis mostly had positive experiences during his initial hospital and rehabilitation facility stays. However, during his second hospitalization, things were different, but being proactive was his solution.
“During my second hospital stay, I felt that instead of including me in the conversation, doctors spent more time talking about me at the end of my bed. I didn’t feel my wishes were being considered. I made the decision to discharge myself and seek a second opinion, which ultimately turned out to be the best decision.
Based on his recovery journey, Gasiamis shares that he also benefited from psychological counseling, improving his diet, practicing gratitude, getting more sleep, and connecting with others with similar experiences.
He also identifies the unhelpful things that otherwise well-meaning people would sometimes say, including:
- “You’ll be back to normal in no time.”
- “At least you’re alive.”
- “You don’t look sick.”
- “Just think positive.”
- “My relative/friend had a stroke, and they’re fine now.”
- “Let me do that for you.”
- “Everything happens for a reason.”
- “You just need to try harder.”
He states, “While these comments were usually meant to be supportive, they often highlighted a lack of understanding about the realities of stroke recovery. What I found most helpful were those who listened, offered practical help, and acknowledged the difficulties without minimizing them.”
The Best of the Post-Stroke Experience
Gasiamis considers many aspects of his post-stroke experience positive. Regarding medical care, he shared that stroke-specific ambulance services, pharmaceuticals like TPA, better imaging, and emerging technologies and devices have led to many patients defying the “you will never walk again” paradigm.
Gasiamis opines, “Having a stroke in this day and age affords a patient access to tools that can support recovery outcomes that would not have been possible 50 years ago.”
In terms of the support of friends and family, the author and successful stroke survivor are clear about what helped most.
“Friends and family were incredibly helpful during my stroke recovery. Their support came in many forms, and certain attitudes, words, and actions stood out as especially beneficial.”
Describing what turned out to be the best medicine for his recovery, Gasiamis enumerates many, including:
- Attitudes like patience, empathy, and encouragement
- Words like “I’m here for you,” “Take your time,” “You’re making great progress,” or “How can I help?”
- Practical day-to-day assistance like cooking and cleaning, regular check-ins, support with physical therapy, and creating a positive healing environment
- Listening, respecting personal boundaries, and encouraging independence
A Recovery Mindset
According to Gasiamis, mindset is key when it comes to stroke recovery.
“A successful recovery mindset is, by default, a growth mindset,” he muses. “A recovery mindset focuses on the long-term journey rather than immediate results. It’s about understanding that recovery is an ongoing process that may have ups and downs. It helps maintain hope and perseverance, even when progress seems slow.”
Gasiamis holds the opinion that a recovery mindset includes the following:
- A positive outlook
- Patience
- Resilience
- Openness to learning
- Self-compassion
- Adaptability
- Goal-setting
- Support-seeking
“Recovery is about celebrating small victories and viewing setbacks as temporary challenges rather than permanent barriers,” Gasiamis reflects.
“Stroke recovery is a marathon, not a sprint. Understanding that improvement takes time can help reduce frustration and stress.”
He adds, “Building resilience is vital; this means bouncing back from setbacks and continuing to push forward despite difficulties. It’s about staying determined and not giving up, even on tough days.”
According to Gasiamis, learning new ways to do things and adapting to limitations are part of the process, as are trying different therapies or techniques, setting realistic and achievable goals, and flexible thinking.
“It’s essential to be kind to oneself. Stroke recovery can be challenging, and self-criticism can hinder progress,” advises Gasiamis. “Embracing self-compassion allows for a more supportive and nurturing approach to recovery.”
In the end, Gasiamis recommends, “Recognizing the importance of support from friends, family, and professionals is crucial. Accepting help and being willing to lean on others can make the recovery process less isolating and more manageable. By cultivating these aspects of mindset, especially a growth mindset and a recovery mindset, a stroke patient can significantly enhance their recovery journey, making it a more positive and successful experience.”
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