This space is where I document the in-between moments — the appointments, the flare-ups, the lessons, the setbacks, and the quiet victories. It’s where I tell the truth about navigating two autoimmune diseases while still choosing to live, lead, and breathe fully.
Today, I want to share where it all began.
Where It All Began
I thought Crohn’s Disease would be the hardest diagnosis I would ever have to process.
At 26 years old, I wasn’t thinking about autoimmune disease. I was thinking about building my career, living my life, and planning my future. Instead, I found myself sitting in doctor’s offices — being poked, prodded, tested, scanned — trying to understand why my body felt like it was quietly turning against me.
There’s a strange kind of relief that comes with finally receiving a diagnosis after years of unexplained pain. Relief that you’re not imagining it. Relief that there’s finally a name for what’s happening.
But that relief is quickly followed by another realization:
This isn’t going away.
In June 2006, I was diagnosed with Crohn’s Disease.
I didn’t know then that it would only be the first chapter in my autoimmune journey.
Learning to Live With Crohn’s
Crohn’s Disease reshaped my life in ways I couldn’t yet comprehend at 26.
It meant chronic pain.
It meant fatigue that sleep didn’t fix.
It meant learning the location of hospital bathrooms everywhere I went.
It meant medications, flare-ups, doctor visits, and constant uncertainty.
Crohn’s and ulcerative colitis — collectively known as inflammatory bowel diseases (IBD) — affect nearly 1 in 100 people. They are chronic, medically incurable diseases that attack the digestive system.
Crohn’s can affect any part of the digestive tract.
Ulcerative colitis affects only the colon.
Symptoms may include abdominal pain, persistent diarrhea, rectal bleeding, fever, weight loss, and severe fatigue. Many patients endure hospitalizations and surgery. Most are diagnosed between the ages of 15 and 35.
I became one of them.
Over the years, I learned how to advocate for myself. I learned how to read lab results. I learned how to push when doctors dismissed symptoms. I learned how to function through pain when the world around me kept moving.
And I committed myself to spreading awareness — because awareness leads to understanding, and understanding leads to change.
For nearly two decades, Crohn’s was the battle I thought I was meant to fight.
Then my body surprised me again.
When Breathing Became a Battle
After almost two years of new, unexplained symptoms — difficulty breathing, neck and shoulder weakness, vocal cord paralysis, diaphragm paralysis — I entered another season of medical uncertainty.
It is terrifying when you cannot breathe properly and no one can tell you why.
It is exhausting when your body feels foreign again — when the rules you thought you understood no longer apply.
Some symptoms overlapped with Crohn’s. But deep down, I knew something else was wrong. And if I’m being completely honest, part of the delay in diagnosis wasn’t just medical complexity — it was feeling unheard. Feeling dismissed. Feeling like I was “overreacting.”
Eventually, I found a team that listened.
In August 2025, after a single-fiber nerve test, I was diagnosed with Myasthenia Gravis.
I remember thinking:
Wasn’t Crohn’s enough?
What Myasthenia Gravis Feels Like
Myasthenia Gravis (MG) is a rare autoimmune disease that affects the voluntary muscles — the ones I control. My arms. My legs. My face. My eyes. My neck. Even the muscles that allow me to breathe.
The best way I can describe it is this:
Imagine walking around with invisible weights strapped to your body.
Imagine how your legs feel after doing 100 squats — shaky, heavy, unreliable.
Now imagine feeling that without doing anything at all.
Some days my head feels too heavy for my neck.
Some days smiling is exhausting.
Some days I am short of breath while simply sitting still.
And yes — if the muscles weaken enough, it can affect my ability to breathe.
You can’t see MG. Most autoimmune diseases fall under the invisible illness umbrella. That’s why “You don’t look sick” — though often well-intentioned — can feel minimizing.
You cannot always see what someone is carrying.
MG is nicknamed the “snowflake disease” because no two cases are the same. Stress worsens mine. A simple disagreement can leave me physically depleted. Something as small as opening a bag of chips can feel like lifting weights.
It is humbling.
It is unpredictable.
It is relentless.
And it is expensive.
Treatments. Infusions. Medications. Specialists. Bills.
When your body is inconsistent, your income can become inconsistent too. That reality weighs on you physically, mentally, and financially.
Treatment and Uncertainty
On October 24, 2025, I received my sixth infusion of Rystiggo.
After that came a four-week break before the next cycle.
The nurse asked me, “Have you noticed improvement?”
I didn’t know how to answer.
Was my breathing slightly better? Maybe.
Was I still exhausted? Yes.
Did my head still feel too heavy some days? Absolutely.
I didn’t feel better… but I didn’t feel worse either.
And with autoimmune disease, sometimes stability is the victory.
Sometimes improvement doesn’t look dramatic.
Sometimes it looks like simply not declining.
And sometimes you don’t realize how much a treatment is helping until you’re forced to go without it.
(I’ll save that story for my next post.)
The Emotional Reality of Dual Diagnosis
Living with two autoimmune diseases changes you.
When my symptoms flare, I shut down. I get quiet. I pull back. I isolate.
Not because I don’t care.
Not because I’m angry.
But because my body is using every ounce of energy just to function.
Grace matters more than people realize.
Patience matters more than people realize.
Living with Crohn’s and Myasthenia Gravis has reshaped me physically, emotionally, and mentally. But it has also strengthened my voice.
I am not sharing this for pity.
I am sharing this for understanding.
For awareness.
For advocacy.
For the person silently struggling who thinks they are alone.
This is not just a story about illness.
This is a story about survival.
About learning your body twice.
About fighting systems while fighting yourself.
About breathing through what you cannot control.
Thank you for spending time in my story today.
If something here resonated with you — whether you’re living with chronic illness, supporting someone who is, or simply learning — I’m grateful you’re here.
This journey is not always easy. It is not always visible. But it is real.
And so are we.
Until next time — breathe gently, advocate kindly, and give yourself grace. 💛
— Kia
The Dual Diagnosis Diaries
Coming Next
In my next entry, I’ll share what happened when I was forced to go three weeks over the prescribed timeframe without the medication that helps me breathe.
It wasn’t a medical decision.
It wasn’t by choice.
It was paperwork.
And those three weeks changed everything.
The Dual Diagnosis Diaries | Kia’s Journey 💜 
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