“Looking fine doesn’t mean I’m not fighting.”
June is Myasthenia Gravis Awareness Month.
If you’re reading this and have never heard of Myasthenia Gravis (MG), you’re not alone.
Before my diagnosis, I had never heard of it either.
In fact, I struggled just to pronounce the name.
Today, it is a condition that impacts nearly every aspect of my life.
Yet most people would never know it by looking at me.
And that’s exactly why awareness matters.
What Is Myasthenia Gravis?
Myasthenia Gravis is a rare autoimmune neuromuscular disease that causes muscle weakness.
In simple terms, my immune system attacks the communication between my nerves and muscles. The messages my brain sends don’t always make it where they need to go.
The result?
Muscles become weak and tire easily.
For some people, that weakness affects the eyes.
For others, it affects speech, swallowing, facial expressions, arms, or legs.
For me, it affects my entire body.
And at times, it has affected something even more important:
My ability to breathe.
Understanding My Type of Myasthenia Gravis
Not all Myasthenia Gravis is the same.
I live with MuSK-positive Myasthenia Gravis, a less common form of the disease that can present differently than the more widely recognized acetylcholine receptor (AChR) positive MG.
For many people with MuSK MG, symptoms can be more severe and may disproportionately affect:
- Breathing muscles
- Swallowing muscles
- Facial muscles
- Neck and shoulder strength
- Speech
Because MuSK MG is less common, awareness is even more important.
Many people living with rare diseases spend years searching for answers before receiving a diagnosis. Some are told their symptoms are stress-related, while others are misdiagnosed entirely.
Awareness helps shorten that journey.
The Symptom People Don’t See
When most people hear the word “weakness,” they think about being tired after a workout.
MG weakness is different.
It’s the feeling of your body simply not responding the way it should.
It’s wanting to smile but struggling to hold the expression.
It’s climbing stairs and feeling like your legs weigh a hundred pounds.
It’s lifting your arms and wondering why something so simple suddenly feels impossible.
It’s being exhausted before your day even begins.
And sometimes, it’s fighting for every breath.
“Myasthenia Gravis affects my muscles. It does not define my strength.”
That is a lesson I continue to learn every day.
Living Between Two Autoimmune Diseases
As if Myasthenia Gravis wasn’t enough, I also live with Crohn’s Disease.
Together, they create a unique set of challenges that most people will never fully understand.
Some days I wake up wondering:
“Is this fatigue from MG?”
“Is it Crohn’s?”
“Is it both?”
The answer is often unclear.
What I do know is that managing one autoimmune disease is difficult.
Managing two requires constant adaptation, resilience, and determination.
There are over 100 recognized autoimmune diseases, and while each presents its own challenges, living with multiple autoimmune conditions means constantly trying to determine which disease is causing which symptom—and whether either one is preparing to flare.
The Reality of Treatment
This year reminded me just how dependent I am on treatment.
Due to an insurance interruption, I went several weeks without my MG medication, Rystiggo.
The decline was frightening.
Breathing became harder.
Weakness increased.
Simple tasks felt overwhelming.
When treatment finally resumed, the improvement wasn’t immediate—but it was undeniable.
My breathing improved.
My strength improved.
And once again, I was reminded that medication is not optional for me.
It is the difference between functioning and struggling.
Recently, my neurologist adjusted my treatment schedule from six weeks on and four weeks off to six weeks on and three weeks off in hopes of reducing the severe fatigue I experience during my off weeks.
Living with MG often means constantly adjusting, adapting, and finding the treatment plan that provides the best quality of life.
What Myasthenia Gravis Has Taught Me
I often say that chronic illness changes you.
Not because it makes you weaker.
But because it forces you to discover strengths you never knew existed.
Myasthenia Gravis has taught me:
- To listen to my body.
- To celebrate small victories.
- To ask for help when I need it.
- To extend grace to myself on difficult days.
- To appreciate every good day.
Most importantly, it has taught me that resilience isn’t about never struggling.
Resilience is continuing forward despite the struggle.
“Myasthenia Gravis affects my muscles. It does not define my strength.”
What I Wish More People Understood
One of the hardest parts of living with Myasthenia Gravis is that it is often invisible.
People see me working.
They see me leading teams.
They see me attending meetings.
They see me smiling.
They see me showing up for my family.
What they don’t see is the energy it takes to make those things happen.
They don’t see the fatigue.
They don’t see the weakness.
They don’t see the days when every task requires more effort than it should.
They don’t see the calculations happening in my head every day:
- How much energy do I have?
- Can I make it through this meeting?
- Do I need to rest now so I can function later?
- Is this exhaustion or weakness?
- Am I pushing too hard?
Awareness isn’t just about knowing the name of a disease.
It’s about understanding the reality of living with it.
The Caregivers Behind the Scenes
Awareness Month is also a time to recognize the caregivers, family members, friends, and medical professionals who support those living with MG.
Chronic illness does not only affect the person diagnosed.
It impacts entire families.
It affects schedules, finances, relationships, and emotional well-being.
To every caregiver who has attended appointments, offered encouragement, provided support during hospitalizations, or simply sat beside someone during a difficult day:
Thank you.
Your role matters more than you know.
Why Awareness Matters
Myasthenia Gravis is considered a rare disease, which means many people go years without ever hearing about it.
Some individuals spend years seeking answers before receiving a diagnosis.
Others are misdiagnosed entirely.
Awareness leads to:
- Earlier diagnosis
- Better understanding
- Increased research
- Improved treatment options
- Greater support for patients and caregivers
- Better recognition of invisible disabilities
Every conversation matters.
Every story matters.
Every person who learns about MG helps make life a little easier for someone living with it.
A Message to the Newly Diagnosed
If you’ve recently been diagnosed with Myasthenia Gravis, you may be feeling overwhelmed.
I understand.
A diagnosis can bring fear, uncertainty, and countless questions.
But it can also bring something else:
Answers.
For many of us, receiving a diagnosis is the first step toward understanding what has been happening to our bodies.
Take it one day at a time.
Learn what you can.
Build a healthcare team you trust.
Connect with others who understand the journey.
And remember:
You are not alone.
There is an entire community of warriors walking this path with you.
My Message to Others Living With MG
If you are living with Myasthenia Gravis, I want you to know this:
I see you.
I understand the frustration.
I understand the fatigue.
I understand the fear that can come when your own muscles refuse to cooperate.
I understand the anxiety that comes with wondering if tomorrow will be a good day or a bad one.
But I also understand the strength it takes to keep moving forward.
Because every day you wake up and continue fighting this disease, you are demonstrating a level of resilience most people will never have to discover within themselves.
“I am more than my diagnosis, but my diagnosis taught me resilience.”
And for that reason, I refuse to let Myasthenia Gravis define me.
To Family, Friends, and Caregivers
If you know someone living with Myasthenia Gravis, thank you for supporting them.
Please remember that symptoms are not always visible.
Sometimes the strongest thing a person with MG does all day is simply get out of bed.
Your patience matters.
Your understanding matters.
Your support matters.
And sometimes, the most powerful thing you can say is:
“I believe you.”
Final Thoughts
June is Myasthenia Gravis Awareness Month.
For me, it is more than a calendar observance.
It is an opportunity to educate, advocate, and share a glimpse into a life that often looks normal from the outside while fighting battles on the inside.
Myasthenia Gravis affects my muscles.
Crohn’s Disease affects my digestive system.
Together, they challenge me daily.
But neither one determines my worth.
Neither one determines my future.
And neither one gets the final say in how I live my life.
I am more than my diagnoses.
I am a leader.
I am an advocate.
I am a daughter, mother, grandmother, and friend.
I am a woman who has faced hospitalizations, uncertainty, setbacks, and fear—and kept moving forward anyway.
I am resilient.
And I am still standing.
“Awareness creates understanding. Understanding creates compassion. And compassion changes lives.”
If sharing my story helps one person feel less alone, one family better understand a loved one, or one person seek answers for symptoms they’ve been struggling to explain, then this journey has a purpose beyond my own.
This June, I invite you to learn more about Myasthenia Gravis, share information, ask questions, and help spread awareness.
Because rare diseases may be uncommon.
But the people living with them deserve to be seen.
💚 June is Myasthenia Gravis Awareness Month. 💚
Let’s make sure no one fights this battle alone.
A Final Call to Action
If you learned something new about Myasthenia Gravis today, I encourage you to share this post.
Awareness begins with conversation.
Conversation leads to understanding.
And understanding can change the life of someone living with an invisible illness.
Whether you are living with MG, caring for someone who is, or simply learning about it for the first time, thank you for taking the time to listen.
Together, we can create a world where those living with Myasthenia Gravis feel seen, understood, and supported.
Living with Crohn’s Disease and Myasthenia Gravis isn’t the life I planned, but it is the life I am learning to navigate with honesty, resilience, and hope. Welcome to The Dual Diagnosis Diaries.
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