It feels like my entire life is spent
managing my illness:
planning, scheduling, organizing medications,
tracking medical and lab appointments,
and calculating whether simple activities are even possible.
Fatigue, anxiety, immobility,
and unpredictable energy levels
are my constant companions.
I’ve always tried to find joy in small places.
But even when I succeed, sometimes I want more.
I want to find joy in big places, in big ways,
in full, happy days instead of fleeting, happy moments.
Just once, when someone asks how I am,
I’d love to say, “I’m fine” and actually mean it.
I’d love to live without timers reminding me
of medications that can’t be late,
without the days-long consequences
of losing track of time just once.
I write books that few people read.
I post words that rarely reach those who truly care.
I make graphics to fill the hours,
not because inspiration has struck.
I make crafts with love,
but rarely have anyone who truly wants them.
I share on social media just to feel some connection:
a few likes, an occasional kind comment,
and then silence again.
Those who once filled my life are kind and encouraging.
They want to hear good things, hopeful things.
I feel like I’m letting them down
on the days when I can’t wear the mask
that hides how empty I sometimes feel.
I long to be needed, but no one needs me.
I long to be productive, but I rarely am.
I used to be the first to offer help.
Now I need help too often to even ask for it.
Good news always seems to be followed
by struggle, fatigue, pain, and a wave
of isolation that never really lifts.
Food, crowds, costs, or distance
create barriers at every turn.
The hobbies that once brought joy
— crafts, gardening, even organizing —
now feel like distant memories
that are too painful or exhausting to even imagine.
When did driving ten minutes require planning and courage?
When did repotting a plant or trimming a shrub
become painful achievements?
When did finding joy become so hard?
I still try. I still smile.
I still hope.
But some days, hope feels so fragile,
like a whisper I can’t quite hear.
by Jan Mariet 10/30/2025
