003 Lonely But Not Alone

The Hidden Isolation of Chronic Illness

Memorable Quotes:

  • “Your loneliness doesn’t make you ungrateful. It makes you real.”
  • “You don’t need to perform your way into belonging. You just get to be.”
  • “People forget you’re sick when you look fine. But your pain is real—even if they can’t see it.”

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Transcription

Ever felt completely alone, even when you’re literally surrounded by people? Like you’re nodding along in a conversation, but inside you’re screaming, ‘No one actually sees me right now.’ Yeah… we’re going there today.

This topic matters so much to us, because loneliness isn’t always about being alone—it’s about not feeling understood. And when you’re living with a chronic illness, especially one that people can’t see, it’s way too easy to feel invisible—even in the middle of a crowd. I know so many of us carry that ache of wanting to feel seen, heard, and truly known… and that’s what we’re unpacking today

During Christmas, at our family get together, I was surrounded by family. It was a happy day and we were celebrating, but I felt so alone. I felt like no one saw the pain I was in. There I was sipping my hot chocolate with a smile pasted on my face, meanwhile my body was screaming in pain. Externally, I was surrounded by people who I love and who love me, but internally, I was exhausted, in pain, and ready for bed.

People forget you’re sick when you “look fine.” Others just… don’t get it. And sometimes, they don’t want to. You end up pretending to be well just to avoid awkwardness. It is a difficult feeling to be “the odd one out” in your own family and to feel like you have to fake it.

Then the guilt trip in your head starts up. “Why can’t I just enjoy this?” “Why do I have to feel bad today of all days.” “Maybe I’m being dramatic, maybe I’m not really this bad off.” (Internal abelism). But the truth is, it’s not your fault and it’s not something you can necessarily change. Your body is trying to survive and so are you. It can be a lonely spot to be in.

Real talk—this won’t magically go away, but here’s what helps:

  • Find just one person you can be real with. Not ten. Not a whole friend group. Just one who gets it or at least tries.
  • Say the feeling out loud. – “I feel unseen right now.” Sometimes just naming it cracks it open.
  • Create tiny pockets of connection.
    • Spoonie friend voice notes.
    • Journaling when you feel disconnected.
    • DM convos that feel more validating than a whole dinner table.
    • Stop forcing fake energy.

If something feels off, you don’t have to pretend it’s fine. You don’t need to perform your way into belonging.

Alright, friend, let’s bring it home.

You’re not broken for feeling this way.

You’re not “too sensitive,” “too much,” or “too needy.” You’re just human—and you’re navigating something most people don’t understand.

Your loneliness doesn’t make you ungrateful. It makes you real. It means you’re craving deeper connection, not just surface-level small talk and forced smiles.

And you? You deserve that.

You deserve real connection—not just company. Not just people in the room, but people who actually see you and get you.

So if this episode hit you in the heart, maybe take a few minutes to journal what came up for you. Or send it to another sister who needs to hear it too—because I promise, she’s out there feeling the same thing.

And remember, you don’t have to explain yourself there. You just get to be.

I see you. And you belong here.

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