Dear Diary,
Looking back, I realize I wasnât just living through a global pandemic.
I was unknowingly living through the beginning of another autoimmune journey.
At the time, I simply didnât know it yet.
When COVID-19 swept across the world, I had already been living with Crohnâs disease for years. Crohnâs had taught me that my immune system didnât always follow the rules. I understood medications, flares, infusions, and the uncertainty that comes with living with an autoimmune disease.
What I didnât know was that another autoimmune disease was quietly waiting in the wings.
Like millions of others, I tried to make the best decisions I could with the information available at the time. Between 2020 and January 2025, I followed the recommendations of my healthcare providers and received COVID-19 vaccinations approximately every six months in an effort to protect myself while living with Crohnâs disease.
Despite those precautions, I still contracted COVID-19 four separate times.
Each infection came with uncertainty.
Each recovery left me wondering if my body had truly bounced back.
It was after my COVID-19 vaccination on October 7, 2023, that I first began noticing symptoms unlike anything I had experienced before.
The fatigue wasnât just exhaustion.
The weakness wasnât something I could push through.
The shortness of breath became harder to ignore.
Simple, everyday tasks suddenly required extraordinary effort.
At first, I blamed everything except what it actually was.
Crohnâs disease.
Stress.
Recovering from COVID.
Long workdays.
Getting older.
Anything but another autoimmune disease.
Although I first noticed symptoms after my October 2023 vaccination, I continued following my healthcare providersâ recommendations and received additional COVID-19 vaccinations, with my final vaccination on January 23, 2025.
What followed were months of uncertainty, specialist appointments, testing, and wondering whether anyone would finally connect the dots.
Eventually, they did.
I was diagnosed with MuSK-positive Myasthenia Gravis, a less common subtype of MG that often affects the muscles responsible for breathing, swallowing, speaking, and facial movement.
People have asked me whether I believe the COVID-19 vaccine caused my Myasthenia Gravis.
My answer has never changed.
I donât know.
And if Iâm being completely honestâŚ
I may never know.
đŚ When COVID-19 Meets Myasthenia Gravis
One of the things Iâve learned since my diagnosis is that COVID-19 itself can present unique challenges for people living with Myasthenia Gravis.
Because MG affects communication between nerves and musclesâincluding the muscles responsible for breathing and swallowingâa respiratory illness like COVID-19 has the potential to worsen symptoms or trigger exacerbations in some individuals.
Many people with MG recover from COVID-19 without long-term complications.
Others experience more significant challenges.
Like so much about autoimmune disease, there is no universal experience.
Every patientâs journey is different.
đ What the Research Says
As Iâve spent time reading medical journals and learning more about Myasthenia Gravis, one thing has become very clear.
The answers are rarely black and white.
Researchers have documented rare reports of new-onset Myasthenia Gravis or symptom exacerbations following both COVID-19 infection and COVID-19 vaccination. However, those reports do not establish a cause-and-effect relationship, and researchers continue studying whether infection, vaccination, or other immune system events may reveal symptoms in individuals whose disease process had already begun.
Research also shows that COVID-19 infection itself may worsen Myasthenia Gravis symptoms, particularly for individuals with respiratory involvement.
For me, thatâs an important distinction.
Because asking questions is not the same as assigning blame.
Sometimes asking questions is simply part of trying to understand your own story.
đ Living with Unanswered Questions
When I look back, I donât see one defining moment.
I see a timeline.
Crohnâs disease.
Multiple COVID-19 vaccinations.
Four COVID-19 infections.
The gradual appearance of symptoms.
A diagnosis of MuSK-positive Myasthenia Gravis.
And a woman trying to understand how all of those pieces fit together.
Did one event change the course of my health?
Did several?
Was Myasthenia Gravis already quietly developing long before I noticed it?
Those are questions current research cannot answer.
Neither can I.
âI may never understand exactly how my journey began, but I refuse to let unanswered questions keep me from moving forward.â
đť Looking Back Through New Eyes
Receiving an MG diagnosis has a way of changing your memories.
Suddenly, moments that once seemed unrelated begin fitting together.
The exhaustion that never quite made sense.
The weakness that couldnât be explained.
The breathlessness that seemed to come out of nowhere.
The days when your body simply refused to cooperate.
Looking back, I realize my body had been trying to tell me something.
I simply didnât yet understand its language.
đ My Reflection
One thing I want to make absolutely clear is this.
This diary entry is my story.
It is not medical advice.
It is not an attempt to tell anyone what decision they should make regarding COVID-19 vaccinations or any other medical treatment.
My experience belongs to me.
Your experience belongs to you.
After receiving my diagnosis, my healthcare team recommended that I no longer receive additional COVID-19 vaccinations because of my specific medical history, diagnosis, and overall health circumstances.
That recommendation was individualized for me and should never be interpreted as guidance for everyone living with Myasthenia Gravis.
Those conversations belong between each patient and their healthcare provider.
What I do know is this.
I cannot rewrite my timeline.
I cannot change my diagnosis.
I cannot answer every question about why my journey unfolded the way it did.
But I can decide what I do with my experience.
I can continue learning.
I can continue advocating.
I can continue supporting research.
And I can continue sharing my story in the hope that someone else feels seen.
Every patient story adds another piece to the puzzle.
While one personâs experience cannot answer scientific questions, our collective experiences can help researchers ask better ones.
As Whitney Houston sang in âI Didnât Know My Own Strength,â we sometimes discover resilience only after life asks more of us than we ever imagined we could give.
Looking back, I realize that strength wasnât something I found after my diagnosis.
It had been growing through every Crohnâs flare, every setback, every unanswered question, and every step that brought me to where I am today.
đ A Note to My Readers
This diary entry reflects my personal experience alongside current medical research. It is not intended to encourage or discourage COVID-19 vaccination or replace medical advice.
Every personâs health history is unique. Decisions regarding COVID-19, Myasthenia Gravis, vaccinations, and treatment should always be made in partnership with your healthcare team.
đ Reflection Corner
Iâd love to hear from you.
Looking back, were there signs of your illness that only made sense after your diagnosis?
How did the COVID-19 pandemic affect your health journey?
Have you ever found yourself living with questions that medicine simply couldnât answer?
If youâre comfortable sharing, Iâd love to hear your story.
Together, our experiences remind one another that no one has to navigate autoimmune disease alone.
đ Thank You for Reading
Thank you for spending part of your day with me.
Whether youâre living with Myasthenia Gravis, Crohnâs disease, another autoimmune condition, or supporting someone who is, I hope this diary entry reminds you that uncertainty does not erase hope.
We may not have every answer today.
But every story sharedâŚ
Every conversation startedâŚ
Every research study publishedâŚ
And every act of advocacy brings us one step closer to understanding these complex diseases.
Until thenâŚ
Iâll continue asking questions.
Iâll continue learning.
Iâll continue advocating.
And Iâll continue writing.
Because if my story helps even one person feel less alone, then every chapter has been worth sharing.
Thank you for being part of The Dual Diagnosis Diaries.
Please consider liking, subscribing, and sharing so together we can continue raising awareness, encouraging thoughtful conversations, and reminding others that life is always bigger than a diagnosis.
With gratitude,
Founder ⢠Author ⢠Advocate ⢠Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries đ
Leave a Reply