26/11/2025
It seems like it’s a day to share other people’s wise words. Trust me I understand what it is like to have a chronic condition that is misunderstood or disbelieved. In my clinic I listen to your story and believe your lived experience.
“What if being believed is the medicine no one prescribed? 🫶🧠🤝
Pain feel lighter when it’s shared, not silenced!
I’m not a clinician. I’m a husband who wakes up grateful for his health and spends each day trying to make the world softer for the woman he loves. I'm a paramedic by trade but I work with medically disabled children. After work I come home to support my chronically ill wife.
Seing other's misfortunes and struggles made me appreciate what I've got - health. So again, I'm not a clinician, but having so many years of experience caring for others and endless curosity to learn, I noticed a thing or two...
If you’re reading this with pain in your body, fog in your head, or heaviness in your heart, let me say this as clearly as I can:
You are seen. You are not imagining it. You should not have to prove your pain to be cared for!
Across hundreds of communities - chronic pain, autoimmune, mental health - so many people quietly share the same eight burdens:
• Invisible—but real—symptoms. Pain, fatigue, brain fog, sensory overload that don’t always show on scans or blood tests. The body can be screaming while the outside looks “fine.” That mismatch is brutal—and it is not your fault.
• Unpredictability. A good hour followed by a collapse. Plans pencilled, erased, pencilled again. Uncertainty itself becomes a stressor; your nervous system stays on alert because tomorrow keeps changing its mind.
• The medical maze (a second illness). Referrals, forms, phone queues, side effects, scheduling, “try this, wait six months.” The admin of staying alive can steal the energy you need to feel alive.
• Not being believed. Minimised, misread, or told it’s “just stress.” Disbelief injures twice—once in the body, again in the soul. No one should have to become a lawyer to earn comfort.
• Identity and grief cycles. Chronic illness redraws the map of who you are—work, friendships, hobbies, dreams—then redraws it again with each flare. Grief and courage often sit at the same table.
• Isolation and loneliness. Pain pulls you from plans; loneliness grows in the empty spaces. Humans heal better in company, but symptoms can make company feel far away.
• Guilt, pressure, stigma. The world moves fast; your body asks you to move slow. Saying “no” starts to feel like failure. You apologise for being human when you should be applauded for enduring.
• Financial strain. Missed hours, missed chances, extra costs. Decisions measured not in preferences but in spoons and bank balances. It’s not “poor planning”—it’s survival math.
I’ve watched versions of all eight play out at home. My wife lives with both physical and neurological pain and the mental weight that trails them; your story is your own, but the shape of the struggle feels familiar. I share this not to center us, only to say that I recognise you.
And underneath these burdens, most people want the same few things - simple, human, hard to ask for in a loud world:
• To be believed first. No debate, no defence—“I hear you. Your pain makes sense.”
• Relief and a little predictability. Small, repeatable things that soften today and plans that flex tomorrow.
• Clarity. Words to explain symptoms and ask for what helps—at home, at work, in clinic.
• Agency. Options they control: pacing, boundaries, permission to stop without guilt.
• Compassionate support. Presence before advice; curiosity before judgment; patience before plans.
• Community and dignity. A place to belong where you are bigger than your diagnosis.
• Realistic hope. Not miracle promises—steady, evidence-aware next steps that add up.
If you’re carrying any of this, know that your limits are information, not failure. Your body is not the enemy but the house that’s asking for quieter days and kinder plans.
If you love someone in this storm, become the safest person in the room. Believe the first time. Ask, “What would make this hour gentler?” Then do exactly that, humbly and well.
Different future? Yes. Lesser life? No.
There is so much life inside smaller circles, softer mornings, truer friendships, boundaries that protect what matters. Humans are social animals. When we carry it together, it is always lighter than carrying it alone.”
Lucjan 🎗