Part One of the “Through Their Eyes” Series
Recently, I sent a questionnaire to family members and friends. My goal was simple: I wanted to understand how my diagnoses of Crohn’s disease and MuSK-positive Myasthenia Gravis have affected the people around me.
For years, I have shared my own perspective—the doctor appointments, the treatments, the sleepless nights, the flares, the fatigue, and the countless moments spent wondering what tomorrow might bring. But chronic illness doesn’t just happen to the person carrying the diagnosis. It quietly ripples outward, touching the people who love us, worry about us, and stand beside us.
This is the first entry in what may become a series: Through Their Eyes. Because while I have spent years documenting my journey, I realized there is another story worth telling—the story of the people who have walked beside me through it all.
The first person to respond was Steph.
Of course it was Steph.
Anyone who knows our friendship knows this should surprise absolutely no one. Before I could even finish refreshing my inbox, there was her response—thoughtful, honest, and somehow both comforting and emotional all at once.
As I read through her answers, I realized something: while I spend so much time wondering whether people truly understand what I’m going through, I’ve rarely stopped to consider what it has been like for them to watch it unfold.
“What Can I Do?”
When Steph first learned about my diagnoses, her immediate reaction wasn’t fear—it was action.
Her first questions were, “What can I do?” and “Are you in any pain?”
That response feels very Steph.
While I was busy learning medical terminology I never wanted to know and trying to navigate a body that seemed to be rewriting its own instruction manual, she was doing her own research. She dove headfirst into understanding Crohn’s disease and Myasthenia Gravis, determined to figure out how to support me.
Google gave her information.
Life gave her perspective.
But she said something that stopped me in my tracks:
“Your words gave me understanding, compassion, and perspective in a way that medical articles never could.”
I had never really thought about that before.
For me, The Dual Diagnosis Diaries began as a place to process my own experiences. It was therapy with a keyboard and a Wi-Fi connection. I never imagined it would also become a translator—a bridge between my world and the people trying to understand it.
The Moment It Became Real
One of Steph’s answers hit especially hard.
When asked when she realized my illnesses were more serious than she had originally thought, she wrote:
“The moment you told me your throat had closed up and you couldn’t breathe, eat, or talk.”
For me, that moment was terrifying.
For the people who love me, it was terrifying in an entirely different way.
She admitted that her immediate thought was whether this disease would slowly take my life.
The truth is, chronic illness creates fears on both sides. Patients fear what comes next, while loved ones fear that there may be very little they can do to help.
The Hardest Part Is the Uncertainty
Steph described the hardest part of supporting me as the uncertainty.
Not the appointments.
Not the cancellations.
Not the days when I disappear into exhaustion and don’t answer my phone.
The uncertainty.
Because chronic illness doesn’t come with an itinerary. There is no calendar invite titled, “Today your muscles won’t cooperate,” or, “Surprise! Crohn’s has decided violence is the answer.”
Trust me, if there were, I would decline the meeting request immediately.
Her answers also gave me something I didn’t realize I needed: permission to stop apologizing for things I cannot control.
She said my diagnoses hadn’t changed our friendship—they had simply provided context.
Context for the last-minute cancellations.
Context for the unanswered texts.
Context for the days when I retreat into survival mode.
How many of us living with chronic illness carry guilt for things our bodies decide for us?
How many times have we typed, “I’m sorry,” when what we really meant was, “I’m doing the best I can today”?
Strength Versus Vulnerability
Perhaps one of the most profound things Steph shared was her belief that I have spent much of this journey trying to be strong because life keeps demanding something from me.
She said she wasn’t sure I had ever truly been given the time or space to be vulnerable and that if I ever allowed myself that space, “it might open some floodgates.”
The truth?
She’s probably right.
Strength has become second nature to me. Somewhere along the way, resilience stopped being a choice and became a requirement. There have been rent to pay, responsibilities to manage, children to love, careers to maintain, and a body that, despite its best efforts, occasionally likes to stage a protest.
And yet, Steph described my journey in one word:
Courageous
Not because I haven’t been afraid.
Not because I’ve had all the answers.
But because, despite fear, uncertainty, setbacks, and challenges that most people never see, I continue to move forward.
As I sat reading her responses, Brandy’s “Have You Ever?” started playing in my head—not because life has been tragic, but because illness has a way of making you wonder whether people truly see you.
Have they noticed the effort it takes to show up?
Do they understand the battles happening behind the scenes?
Can they see the version of you that exists beneath the smile and the “I’m fine”?
Steph’s answers reminded me that sometimes, people do see us.
Maybe not every symptom.
Maybe not every fear.
But they see our fight.
They see our courage.
And sometimes, they carry pieces of our story alongside us in ways we never fully realize.
Looking Through Their Eyes
I’m still waiting for more responses from family and friends. My mom answered next, though her responses were much shorter. Others are still taking their time.
And that’s okay.
Because this exercise was never really about collecting answers.
It was about seeing myself through the eyes of the people who have walked this journey beside me.
And if Steph’s perspective taught me anything, it’s this:
The people who love us may never completely understand our illnesses.
But love often looks like researching diseases you can’t pronounce, worrying in silence, answering the phone with “How are you feeling today?”, and simply showing up—again and again—even when you don’t know what to say.
💜 Thank you, Steph, for seeing me when I didn’t realize I needed to be seen.
💜 Thank you for taking the time to read this entry from The Dual Diagnosis Diaries.
If this story resonated with you, taught you something new, or reminded you that you’re not alone, please consider liking, subscribing, and sharing this diary entry. Your support helps raise awareness, foster understanding, and build a community for those navigating life with chronic illness.
With gratitude,
Kia Lorice
Founder • Author • Advocate • Future Wellness Coach
The Dual Diagnosis Diaries 💜
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