As I traveled down the rabbit hole of Instagram this morning, I found myself scrolling through page after page belonging to other chronically ill individuals.
Why, you may ask?
Because ever since starting The Dual Diagnosis Diaries, the algorithm gods have apparently decided that chronic illness is now my entire personality.
Forget little JoJo’s prom photos.
Forget vacation pictures.
Forget the cute puppy videos.
Forget the recipe videos I’ll save and never actually make.
Nope.
According to Instagram, what I really want to see is an endless stream of posts about invisible illnesses, medication side effects, hospital stays, feeding tubes, mobility aids, and inspirational quotes written in cursive over watercolor backgrounds.
Thanks, algorithm.
My timeline left me with conflicting emotions.
On one hand, I was happy.
Happy because I felt seen.
There is something incredibly validating about realizing there are other people who truly understand what you’re going through. People who don’t need lengthy explanations. People who immediately understand why taking a shower can sometimes qualify as a major accomplishment.
It reminds you that you aren’t alone.
But on the other hand, it made me sad.
Sad because why do these people have to go through this?
Why are any of us going through this?
Why is this the hand we were dealt?
When we share our stories, we’re often met with well-intentioned phrases like:
“God never gives you more than you can handle.”
I know people mean well when they say it.
I try hard to rely on my faith, but sometimes it feels like God has a much higher opinion of me than I have of myself. There are still days when the weight of it all feels overwhelming.
And if I’m being completely honest, some days it feels like more than I can carry.
My morning trip down the social media rabbit hole got me thinking about a few things chronically ill people wish others understood.
Things Chronically Ill People Wish You Knew
💜 We don’t want our lives to revolve around illness.
Unfortunately, our bodies don’t always give us a choice.
💜 We are so much more than our diagnoses.
We are parents, partners, professionals, friends, dreamers, advocates, caregivers, and so much more. Chronic illness may shape our lives, but it does not define who we are.
💜 We often hide our pain and discomfort to make things easier for others.
Just because we aren’t talking about it doesn’t mean we aren’t feeling it.
💜 Sometimes we spend more time managing our health than actually living our lives.
Appointments, medications, insurance calls, lab work, treatments, prior authorizations, pharmacy delays, insurance denials—being chronically ill can feel like a full-time job that none of us applied for.
💜 We have dreams and aspirations just like everyone else.
Sometimes we’re simply trapped in bodies that won’t cooperate. We grieve the lives we imagined while learning how to build meaningful lives with the bodies we have.
💜 You have probably never seen us at our worst.
Many of us reserve those moments for behind closed doors. The version of ourselves that the world sees is often carefully curated from whatever energy we have left.
💜 We don’t always know how we’ll feel an hour from now, let alone next week.
Plans aren’t canceled because we don’t care. They’re canceled because our bodies made the decision for us.
💜 We celebrate victories that other people rarely think twice about.
Taking a shower. Making a meal. Answering messages. Leaving the house. Getting through a workday. These are sometimes huge accomplishments.
💜 Many of us look fine while dealing with symptoms that would keep others in bed.
Invisible illnesses are exactly that—invisible.
💜 We often mourn the life we imagined while still trying to build a meaningful life with the one we have.
Grief and gratitude often coexist in the chronic illness community.
💜 We may look calm on the outside while managing pain, fatigue, weakness, nausea, shortness of breath, or dozens of other symptoms on the inside.
💜 We become experts at finding joy in the small things.
A good lab result. A symptom-free afternoon. Enough energy to sit outside. Because sometimes small things are all we have the energy for.
💜 There is a difference between existing and living.
Many of us are fighting every single day for the chance to do more than merely survive.
💜 We often push ourselves beyond our limits because we don’t want to miss out on life.
Unfortunately, that sometimes comes with consequences later. Many of us have mastered the art of borrowing tomorrow’s energy to participate today.
💜 We don’t want pity.
What we want is understanding.
💜 Sometimes the most helpful thing you can say isn’t, “Everything happens for a reason.”
Sometimes it’s simply, “I’m here. I believe you. And you don’t have to go through this alone.”
Final Thoughts
Living with chronic illness changes you.
It changes your priorities.
It changes your relationships.
It changes how you celebrate victories and how you define success.
But perhaps most importantly, it teaches you that compassion matters.
Because you never truly know what someone is carrying behind the smile they wear or behind the words, “I’m fine.”
And if you happen to encounter one of us out in the wild, just know we’re doing the best we can with the bodies we’ve been given.
Some days we’re thriving.
Some days we’re surviving.
And some days we’re simply trying to convince the algorithm gods that we would, in fact, like to see pictures of puppies again.
Until then, I’ll be right here in the rabbit hole.
With the rest of my chronically ill friends—finding humor where we can, celebrating the smallest victories, and continuing to fight for more than mere survival.
💜
Thank you for taking the time to read this entry from The Dual Diagnosis Diaries. My hope is that by sharing my journey with Crohn’s Disease, Myasthenia Gravis, and polyautoimmunity, others will feel seen, understood, and a little less alone.
If this story resonated with you, please consider sharing it. You never know who might need the reminder that they are not fighting alone.
Founder • Author • Advocate • Future Wellness Coach
Kia Lorice
The Dual Diagnosis Diaries 💜
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