What No One Tells You About Chronic Illness
When I was diagnosed with a chronic illness, I braced myself for big changes—medications, diet shifts, lifestyle adjustments. But what no one warned me about is how even the "small" changes can feel like climbing Mount Everest in flip-flops.
Doctors and health professionals often present a tidy roadmap: take these meds, follow this diet, track your symptoms, and you’ll improve. In reality, progress is messy. It’s slow. It’s full of contradictions.
One moment, I was just trying to survive the day. Then the next day, I am drowning in medical jargon, lifestyle overhauls, and an endless to-do list. Suddenly, expected to:
Keep a symptom journal (as if you have the energy to document every ache and twinge).
Learn a new vocabulary—spoon theory, flares, remission, triggers—while also figuring out how to recognize them in yourself.
Change how I eat, move, sleep, and think—all at once.
Track medications, side effects, doctor’s appointments, and lab results.
And I am doing all this while already running on fumes. It is exhausting t say the least.
The Complexity of Navigating Lifestyle Change
Making lifestyle changes when you already feel like a shell of a human is brutal. Drinking more water sounds simple—until your body starts reacting weirdly, and suddenly, you're Googling Can you be allergic to hydration?
Eating "better" is another vague recommendation. What if you already eat well? And what does "better" even mean when every doctor gives conflicting advice? One says cut out gluten, another suggests low-FODMAP, and a third cheerfully says just listen to your body—which, frankly, is screaming in ten different directions.
Exercise? Sure. Move too much, and you crash for days. Move too little, and your body stiffens up like you’ve been cursed in a fairy tale. Every step forward seems to come with setbacks, and nothing feels predictable. Which makes tracking unproductive.
The Tracking Nightmare
Tracking symptoms, food, sleep, medications, and triggers is supposed to help, but it quickly feels like a second job. No one tells you how frustrating it is to track everything perfectly—only to still feel awful.
Then comes the decision fatigue: How am I even going to track all this? App? Notebook? Elaborate bullet journal with color-coded charts? And when the patterns don’t make sense, you start to wonder: Is my body gaslighting me?
Finding a "Baseline" Takes Forever
They say, "Find your baseline." What they don’t say is that it can take months—sometimes years—to figure out what "normal" even looks like for you now. In that time, you’ll experiment with countless treatments, supplements, and therapies, each promising hope but delivering mixed results. Also remember that you should not try all of these at once, because then you will not know what worked.
Some days, you feel okay. Other days, a simple grocery run wipes you out for three days. Adjusting to this inconsistency is one of the hardest mental battles I have found for myself.
And yet, you keep going—because what choice do you have?
How I am currently managing it?
To be point blank honest I currently spend a lot of time masking. For those who may not be familiar, masking is when you learn to pretend you’re okay, even when you’re not. Smiling through pain, pushing through exhaustion, and minimizing symptoms for the comfort of others becomes second nature. It often backfires, just a heads up. But what is the other option, tell people exactly how you feel which is a total bummer.
Chronic illness forces you to parent yourself in a way that feels both exhausting and necessary. You learn to give yourself grace, to prioritize comfort, and to find joy in small things—even if it’s just cuddling up with a heating pad and watching Love is Blind on Netflix (shout out to season 8!).
Final Thoughts
Progress happens in baby steps. Some days, that means just getting out of bed. Other days, it means cooking a meal from scratch. And some days, it means doing absolutely nothing because your body is demanding rest. It's a journey!
There is so much when it comes to chronic illness. There is a lot of information and a lot of product suggestions out there. Chronic illness isn’t just about managing symptoms—it’s about redefining what “normal” looks like for you. No one gives you a guidebook on how to cope with the sheer emotional, mental, and physical toll it takes. But little by little, you adapt. You find what works (and what definitely doesn’t). And most importantly, you keep going—even when it feels impossible.
Because even when it doesn’t feel like it, you are making progress. And that’s enough.
If this resonates with you, know that you’re not alone. Managing chronic illness is overwhelming, but sharing our experiences can make it a little easier. Drop a comment with your biggest struggle or the best tip you've discovered. Let’s support each other through this unpredictable journey!
