Having an invisible illness can sometimes leave you feeling like you’re not sick enough.

Which is a bizarre thing to want. You don’t want to be sick. You don’t necessarily want to look sick either. But sometimes you want people to be able to see it.

Because when they can’t, there are assumptions.

You look fine, so you should be able to work like everyone else. Keep up in your relationships. Handle basic life things. People talk about illness around you without realizing they’re talking about you.

Then there’s the explaining. How sick do I say I am? Will they believe me? Am I being dramatic? Do I need to prove it?

Living in a body that feels very unwell while moving through the world looking “fine” can mess with your sense of self.

This Space is for that weird, exhausting gap between how sick you feel and how sick the world thinks you are.

You don’t have to prove it here. We get it.

Tell a Spoonie. See y’all soon. 🥄

Vibe: Rest without apology. Truth without proof.

This Space is for people living with chronic pain, chronic illness, or the blurry in-between. It’s for when you’re tired of being doubted, tired of being strong, and just… tired. Here, you don’t have to convince anyone of what you live with. You don’t have to downplay it or over-perform to be believed.

🫂 THIS SPACE IS FOR YOU IF:

• You’ve lost jobs, friendships, or parts of yourself to pain or illness.
• You’re managing symptoms and managing the disbelief of others.
• You’re tired of suggestions. You want solidarity, not solutions.
• You want accommodations, and also don’t want to be seen as “less.”
• You say “I’m fine” when you’re not, because it’s easier.
• You follow every health routine—or ignore them—because both are survival.
• You’re stuck between wanting a diagnosis and fearing what it could mean.
• You’re just looking for one hour where you don’t have to pretend you’re OK.

In this Space, we honor boundaries, rest, rage, and contradiction. We don’t require “silver linings” or progress updates. We believe that grief, joy, shame, and relief all have room here.

💬 TOPICS WE MAY EXPLORE:

• Support Without Fixing
• Asking for Accommodations
• Grief for the “Before” Self
• Medical Trauma and Mistrust
• Invisible Illness
• Wellness Culture Disillusionment
• Coping Trade-offs
• Needing a Break From Illness Talk
• Being Seen Fully

💚 WHY THIS SPACE MATTERS:

Living with chronic illness or pain can make the world feel like it’s not built for you. You navigate every day carrying weight others can’t see—constantly adapting, advocating, and enduring. That’s why this Space matters. It gives you permission to just be.

You can join with your camera off, mid-flare, horizontal, silent. You can show up as you are: sick, uncertain, angry, lonely, laughing, grieving. This is your hour to not be productive. To not teach anyone. To not perform wellness. To be more than a diagnosis—and more than a body in pain.

This Space is held twice a month on Tuesday's. Tell a Spoonie. See ya'll soon!

Please reach out to Claire if you need any accomodations to participate in this Space: claire@totem.org.