part 2: what loved ones, doctors, and coworkers don’t see
Invisible Illness Isn’t Always Obvious
People see the smiles, the posts, the photos.
People don’t see the flares, the exhaustion, or the careful planning it took just to get through the day.
Every day is a balancing act, deciding how to spend your energy without tipping over. This is what life with invisible autoimmune and chronic pain conditions really looks like.
👨👩👧 When Loved Ones Miss the Struggle
“You look great today.”
What they don’t see: It’s a flare day. Getting ready took hours longer than usual. Your body aches, your energy is gone, and mentally, you’re just trying to “fake it until you make it.” You could use more support—but no one knows.
🩺 When Health Professionals Miss the Struggle
“Your labs are looking really good!”
What they don’t see: You leave the appointment frustrated and deflated. Three months of worsening symptoms aren’t reflected in those “great” results. You waited months for this appointment, and your experience feels dismissed.
💼 When Coworkers Miss the Struggle
“You are amazing. I knew you could get this done. You’re a rockstar!”
What they don’t see: The project took ten hours instead of two. Brain fog slowed you down. Pain forced multiple breaks. Stress made everything worse. You slept all weekend to recover and missed your kid’s soccer game. Nutrition suffered because your day stretched beyond limits. I’ve been there—pushing through while your body is screaming is exhausting.
🎉 When People Miss the Struggle Behind Your Social Life
“You do so many fun things. Your life looks exciting!”
What they don’t see: You said no to multiple events just to save energy for one night. You prepped for days with extra sleep, careful nutrition, and pacing. The day after the concert is entirely for rest. That one fun night came with many sacrifices. Even the happiest posts often hide the huge effort behind the scenes.
Other Everyday Struggles People Might Miss
Phone calls or meetings feel exhausting because focusing and responding takes extra effort with brain fog.
Cooking dinner requires careful planning to avoid triggering flares later.
Even simple chores like folding laundry, making the bed, or showering can feel like a full workout.
Unexpected noises, lights, or crowds can trigger flare-ups or worsen pain, often in busy stores or public spaces.
Grieving the version of yourself that no longer exists while figuring out your condition.
These are just glimpses of life with symptoms no one else can see.
Even though much of this struggle is invisible, it doesn’t mean it goes unnoticed forever. Each small act of self-compassion, each time someone checks in or truly listens, is a step toward feeling seen and supported. Life with invisible illness is hard—but it’s also full of moments where connection, understanding, and resilience shine through.
In Part 3 of The Hidden Challenges of Invisible Illness and Chronic Pain series, we’ll explore how to use simple questions to help loved ones see what you’re going through and build connections.