💚 A Random Conversation and a New Word
The other evening, I was texting my friend Steph.
We had started out talking about dating, relationships, and all the other random topics that somehow find their way into our conversations.
If you’ve ever had one of those friendships where a conversation can start in one place and end somewhere completely different, then you understand.
One minute we’re talking about dating.
The next minute we’re discussing autoimmune diseases.
Per usual, something completely random came up.
As many of you know, before I publish most posts for The Dual Diagnosis Diaries, I often send them to a few trusted people for feedback. Somewhere in the middle of our conversation, I sent Steph a draft of another blog post.
A little while later, my phone buzzed.
Steph had responded.
But instead of feedback on the post itself, she sent me a text that said something along the lines of:
“You know you’re part of the 25% with polyautoimmunity, right?”
My immediate response?
“What?!?!”
Not because I disagreed.
Because I had absolutely no idea what she was talking about.
Polyautoimmunity?
What in the world was polyautoimmunity?
Was she trying to tell me I had something else wrong with me?
Had I missed a diagnosis somewhere?
Naturally, I did what most of us do when we’re confused.
Google to the rescue.
A few minutes later, there it was.
Polyautoimmunity.
The coexistence of two or more autoimmune diseases in the same person.
And just like that, I learned there was an actual medical term for something I was already living every single day.
💙 Wait… There’s a Name for This?
The funny thing is, the concept wasn’t new to me.
I already knew that many people with one autoimmune disease eventually develop another.
I’ve heard countless stories from autoimmune warriors who started with one diagnosis and later found themselves facing a second, third, or even fourth autoimmune condition.
I just didn’t know there was a word for it.
Honestly, discovering the term felt a little like finding out you’ve been speaking a language your entire life without realizing it had a name.
I’ve been living with polyautoimmunity for years.
I just didn’t know that’s what it was called.
The irony isn’t lost on me.
The Dual Diagnosis Diaries was literally built around the fact that I live with two autoimmune diseases.
I’ve spent months writing about life with Crohn’s Disease and MuSK Myasthenia Gravis.
I’ve shared the struggles, victories, frustrations, and lessons learned along the way.
Yet somehow, I had never heard the word polyautoimmunity.
I created an entire platform around living with dual diagnoses before learning there was a medical term for it.
💚 If I Had This Kind of Luck with the Lottery…
Learning about polyautoimmunity made me laugh and think of what I always say to my mom:
“If I had this type of luck with the lottery, I’d be rich.”
Because somehow I managed to hit the autoimmune jackpot instead.
First Crohn’s Disease.
Then Myasthenia Gravis.
Not just Myasthenia Gravis, but MuSK-positive Myasthenia Gravis, one of the rarer forms of the disease.
Apparently, my immune system believes in collecting diagnoses the way some people collect stamps.
If there’s a rare disease club, it seems determined to sign me up.
💙 Living with Two Autoimmune Diseases
People often ask me what it’s like having both Crohn’s Disease and Myasthenia Gravis.
The truth is that they are completely different diseases.
Crohn’s attacks my digestive system.
MG attacks the communication between my nerves and muscles.
One can leave me running to the bathroom.
The other can leave me struggling to breathe.
One affects digestion and inflammation.
The other affects strength, swallowing, speaking, vision, and energy.
Some days Crohn’s takes center stage.
Some days MG steals the spotlight.
And on particularly rude days, they decide to tag-team me.
Those are the days when survival mode kicks in.
The reality is that managing one autoimmune disease is difficult.
Managing two requires a different level of resilience.
It requires learning to listen to your body, advocate for yourself, and constantly adapt to whatever challenge decides to show up that day.
💚 Looking Back, It Makes Sense
When I was diagnosed with Crohn’s Disease, I thought I finally had my answer.
I thought I had figured out what was wrong with my body.
I never imagined that years later I would spend more than three years searching for answers to symptoms that would eventually lead to a diagnosis of Myasthenia Gravis.
For more than three years, I fought to be heard.
I knew something wasn’t right.
I knew my breathing difficulties weren’t normal.
I knew my body was trying to tell me something.
The challenge was convincing others to listen.
Looking back now, learning about polyautoimmunity makes a lot of things make sense.
Not because it changes my diagnoses.
Not because it changes my treatment.
But because it reminds me that my experience isn’t as unusual as I once thought.
Many autoimmune warriors walk this same road.
💙 Why Awareness Matters
One of the reasons I wanted to write about polyautoimmunity is because I suspect many people living with autoimmune diseases have never heard the term either.
I certainly hadn’t.
Yet many of us are living it.
Sometimes new symptoms are dismissed as part of an existing diagnosis.
Sometimes we’re told it’s stress.
Sometimes we’re told everything looks normal.
And sometimes those symptoms turn out to be an entirely separate autoimmune disease.
That’s why listening to your body matters.
That’s why self-advocacy matters.
And that’s why continuing to ask questions matters.
Because nobody knows your body better than you do.
If sharing this post teaches even one person a new word the way Steph taught me one, then it was worth writing.
💚 Final Thoughts
Learning the word polyautoimmunity didn’t change my life.
I still have Crohn’s Disease.
I still have Myasthenia Gravis.
I still have doctor’s appointments, treatments, medications, good days, and bad days.
But it did give me a new understanding of my journey.
Sometimes there is comfort in finding the language for what you’re already experiencing.
So thank you, Steph, for sending me down another Google rabbit hole.
Thank you for teaching me a new word.
And thank you for reminding me that some of the best learning moments come from the most random conversations.
Apparently, I’ve been living with polyautoimmunity for years.
I just didn’t know there was a name for it.
Leave it to a conversation about dating to somehow turn into a lesson about autoimmune diseases.
Then again, if you’re friends with me, that’s probably not surprising.
💚💙 The Takeaway
Polyautoimmunity may have been a new word to me, but the experience wasn’t.
For many of us living with autoimmune diseases, one diagnosis doesn’t always tell the whole story.
If your body is telling you something, keep asking questions.
Keep advocating for yourself.
Keep searching for answers.
You know your body better than anyone else.
And if your journey includes more than one diagnosis, know that you are not alone.
💚💙 The Dual Diagnosis Diaries
Living with Crohn’s Disease and MuSK Myasthenia Gravis means navigating two autoimmune diseases, countless challenges, and more medical terminology than I ever wanted to learn. Through sharing my story, I hope to raise awareness, create understanding, and remind others that they are never alone in their fight.
One diagnosis. Then another. Still standing. Still fighting. Still sharing my story.
#Polyautoimmunity #CrohnsDisease #MyastheniaGravis #MuskMG #AutoimmuneDisease #ChronicIllnessWarrior #RareDisease #DualDiagnosis #TheDualDiagnosisDiaries
Leave a Reply