The Unseen 80%
- Lewis Bartelle
- Oct 11
- 4 min read
Updated: Oct 26
A Survivor's Guide to the Unseen Stroke Battle
Hey friends, I’m Lewis, and I want to talk about the part of Unseen Stroke Recovery that almost everyone misses.
When I survived my stroke—the ruptured brain aneurysm that abruptly crashed my world—I was incredibly grateful for the outward support. The doctors, nurses, and therapists who got me walking again were heroes. The physical disorder, the visible recovery—that part was immediately addressed. For that, I’m eternally thankful.
But here’s the tough truth I learned: the stroke event itself was only the beginning. The journey isn't just about recovering; it's about learning to live with the aftermath. Most people, even those closest to us, only ever see a fraction of the battle.
This is why I want to share the perfect metaphor for our journey: The Iceberg.
The Hidden Mass: The Unseen 80%
Think about a massive iceberg floating in the ocean.
The small portion visible above the water is the stroke event and the initial, intensive physical rehab. It’s what gets the most support and public recognition—the paralysis, the dramatic recovery.
But the vast, cold, complex mass hidden below the surface? That is the daily, grinding reality of life with the stroke’s lasting symptoms—the unseen 80%. This is the battle we survivors fight in silence.
We don't just live with the stroke; we live with its symptoms. For me, the hidden 80% includes:
Dysarthria: The motor speech disorder that requires constant effort to be understood.
Ataxia: The loss of full bodily control, coordination issues, and constant off-balance feeling.
Double Vision: A symptom that makes basic tasks like reading incredibly frustrating.
The Darn Rehab: The ceaseless, mentally exhausting work we do every day just to maintain small gains.
I know many of you have your own list—pain, fatigue, cognitive fog—and that’s the point. These invisible struggles are what turn survivors into warriors. We compensate daily, trying to act as normal as we can, fighting a battle no one else can see.
I know many of you have your own list—pain, fatigue, cognitive fog—and that’s the point. These invisible struggles are what turn survivors into warriors. We compensate daily, trying to act as normal as we can, fighting a battle no one else can see.
The Dysarthria Dilemma: The Silent Isolation
Of all the unseen symptoms, the one that creates the most profound sense of isolation is dysarthria. Did you know that close to 40% of stroke patients experience dysarthria? It affects the most fundamental part of our identity: our voice and our ability to communicate.
The tragedy is that it leads to a communication breakdown rooted in misunderstanding. It’s the difference between feeling disabled and feeling unheard.
We are fighting two battles at once: the internal struggle to form the words, and the external struggle to have those slurred words listened to correctly.
Essential Communication Guide: Tips for Speakers and Listeners
To bridge this gap, both parties need a toolkit. These adjustments are vital for successful Unseen Stroke Recovery:
If You Have Dysarthria (The Speaker)
Pace Yourself: This is critical. Don't let yourself be rushed by the listener. Consciously slow down and take your time.
Use Gestures (Play Charades): Embrace body language! It turns our conversation into a simple "Charades" game, which can be fun and clarify your point instantly.
Manage Your Breath: Dysarthria often affects breath control. If you need to stop to breathe or clear your throat, make a clear motion that indicates you are not finished with your thought.
If You Are Talking to Someone with Dysarthria (The Listener)
Don’t Rush or Interrupt: When we pause, it's often to catch our breath. Give us a 3-4 second count before talking back to ensure we are fully done with our thought. Rushing us breaks the focused speech pattern we work hard to maintain.
Make Eye Contact: This helps you read facial expressions and body language, giving you valuable clues.
Encourage, Don't Pretend: If you’re not sure what we said, it’s completely okay to ask us to repeat or rephrase. Pretending you understood is far more frustrating than having to say a word twice.
For a deeper understanding of the science behind brain repair, I encourage you to read about Neuroplasticity and Stroke Recovery
The Word and Beyond: Your Roadmap
When I realized there was no instruction manual for navigating the unseen 80% and the daily struggle of dysarthria, I knew I had to write one myself. I was determined to transform my confusing recovery into guidance for others.
That’s what The Word is—my free resource to help pull you up. It’s a collection of stories and inspiring thoughts, all turned into teachable moments for stroke support. This platform, and the rest of our Stroke Support articles are here to provide the awareness I badly needed.
But I didn't stop there. I compiled all my insights, strategies, and blueprints for rebuilding your life into my book, Beyond Shattered.
This is the complete manual that wasn't handed out with my stroke—written specifically to help you navigate the unseen challenges and thrive in your second life.
For anyone confused, lost, or struggling to make the world see the massive battle being fought below the surface, know this: You are not alone. I have created the roadmap, and I’m here to help you every step of the way.
