Welcome, Spoonies đ
My story of living with axial spondyloarthritis
I love the fact that I donât need to explain anything to a fellow spoonie.
You know what itâs like to wake up exhausted, to spend the whole day managing pain, fatigue, brain fog - and then do it all again tomorrow.
You also know how challenging it can feel to live in a body that doesnât cooperate â in a world that mostly expects it to. Itâs hard to explain what itâs like without living it.
Thatâs why spaces like this matter.
Because here, you donât have to explain. You can just be who you are.
Why Iâm writing this
Iâve been living with a chronic autoimmune condition for over two decades.
Itâs the kind that affects your joints, your energy, your plans â your entire life, really. Some days itâs manageable. Other days, itâs⊠not.
Over the years, Iâve learned a few things:
That life doesnât follow the script you thought it would
That pacing yourself is hard, but ultimately easier than not
That small things matter more than big ones
And that connection with people who understand is great medicine
But getting that connection in real life? Itâs not always easy.
When youâre chronically ill, even meeting up with someone can feel like coordinating a miracle.
So we end up doing a lot of this alone.
Or at least⊠it feels that way.
My story (a very short version)
My symptoms started when I was 17.
At first, I tried to push through â do the ânormal lifeâ thing. University, career, social life. But over time, the pain and fatigue got worse, and pretending I was fine stopped working.
Eventually, I hit a wall.
Counselling helped me realise just how much Iâd been bottling up â fear, frustration, grief. Saying âIâm in a lot of painâ out loud was a turning point.
Later, I found a treatment that worked incredibly well⊠for a while. I got a glimpse of what life could feel like without constant pain.
And then it stopped working. That crash back down was hard.
At one point, I went through what I now call The Big Flare â months of severe pain, barely able to move, stuck between bed and sofa, just trying to get through each day.
That really challenging episode was a turning point.
What helped (and what changed)
Two things made a huge difference:
1. Learning to ask for help
Actually being honest â with doctors, with others, and with myself.
2. Mindfulness
Learning to be with my pain in this moment, and be okay with it. It helped me understand something important: instead of resisting the pain, wanting it to be gone, for my life to be different, I could accept it as it was.
Instead of fighting an exhausting fight, I could let it go and just be with it. And the strange thing is, when you really pay attention to your pain with compassion, in a safe, calm meditation session, it can suddenly feel a lot less dominating. Even, sometimes, something like an old, sick friend.
Letting go of that resistance didnât fix everything â but it sometimes gave me space to breathe again.
Where I am now
Eventually, I had to accept something difficult:
My career - the one Iâd worked so hard for - wasnât compatible with my health.
So I left it.
Now I work for myself, building a symptom tracking app for people with chronic illness. Itâs far from easy, and I earn a lot less than I used toâŠ
âŠbut I have something I didnât have before:
Flexibility. Control. Breathing room.
And most importantly - a purpose.
What This Space Is About
This Substack is for:
Sharing the reality of chronic illness â the good, the bad, the absurd
Connecting with other people who live this every day
Sharing my knowledge of tech and privacy to raise awareness of how to control your health data
The occasional update about my privacy-first symptom diary app Chronic Insights
Your Turn
If any of this resonates with you, Iâd love to hear from you.
Whatâs your story?
Whatâs been the hardest part for you?
Whatâs helped, even a little?
You can reply here, or just stick around and read â both are equally welcome.
Youâre not alone in this.
â James đ