Little Hope Notes

Living with chronic illness isn’t just about managing symptoms — it’s about managing everything that comes with them. The missed texts. The canceled plans. The feelings of isolation when your body says no to things your heart desperately wants to say yes to.

For me, navigating POTS and Endometriosis has completely reshaped how I experience friendship. It’s made connection feel both more challenging and more sacred.

If you’re living with a chronic illness and wondering how to maintain (or even create) meaningful friendships — I want you to know this: you’re not alone, and it’s okay to not be okay.

Here’s what’s helped me:

Be Honest About Where You’re At — Even When It Feels Messy

Chronic illness comes with a constant ebb and flow — and that can make it hard to show up consistently in friendships.

But here’s the truth: you don’t have to show up perfectly to be loved.

Let your people in. Be honest about your limits and your needs. Say things like:

• “I really want to hang out, but I’m in a flare. Can we reschedule?”
• “I’m low on energy, but I’d love to catch up via text.”
• “I’m struggling right now — I might not respond quickly, but I care about you.”

The people who care about you will get it. And the right friends won’t make you feel guilty for needing grace.

It’s Okay to Not Be Okay

There’s so much pressure to put on a brave face. To be “strong,” “inspiring,” or “positive” even when your body feels like it’s falling apart. But forcing yourself to fake it ’til you make it for others can be exhausting.

So I’m giving you permission (and maybe you can give it to yourself too): it’s okay to not be okay.

The people worth keeping close will meet you in the mess. They won’t expect you to sugarcoat the hard stuff. They’ll sit with you in the quiet, the sad, the still.

Let your friendships be a soft place to land — not another performance to uphold.

Surround Yourself with Friends Who Create Space for You

Friendship is not about perfection. It’s about presence.

One of the greatest gifts you can give yourself is choosing to spend your energy — however limited — on people who create space for your reality. Friends who:

• Don’t take it personally when you cancel
• Check in without expectations
• Hold space without needing you to explain everything
• Celebrate the small victories with you

You deserve friendships that feel safe. Soft. Supportive.
Even if you only have the capacity for one or two close people — that is enough when the connection is real.

Redefine What Friendship Looks Like

Your body might not let you go out for a hike or travel on a whim — and that’s okay. True friendship doesn’t have to look like movies or Instagram highlight reels.

Some of my favorite moments with friends have been simple and slow:

• A cozy FaceTime while we both rest
• Voice notes instead of long convos
• Sharing playlists, memes, or favorite books
• Sending “thinking of you” texts with zero pressure to reply

You get to redefine friendship on your terms. You don’t owe anyone high energy. You just get to be real — and that’s more than enough.

Grieve What You’ve Lost — and Make Room for What’s New

Chronic illness often brings grief. Not just for your health, but for the friendships that may fade as your capacity changes. And that grief is valid. So valid.

But don’t forget: there are people out there who are capable of meeting you where you are — and loving you there. You may lose a few friends, but you’ll gain deeper ones. The ones who see your heart, not just your availability.

You are worthy of love even in your most limited moments.

You’re Still a Good Friend, Even if You Show Up Differently

On your hardest days, you might feel like you have nothing to offer. But I promise you — you do.

Chronic illness has given me deep empathy. Emotional presence. A new capacity to hold space for others, even if I’m doing it from bed with a heating pad strapped to my stomach and a Gatorade in hand.

Being a good friend isn’t about doing the most. It’s about showing up authentically. And you, my fellow spoonie, have a beautiful way of showing up — even when it’s quiet, slow, or small.

So if you’re reading this in bed, mid-flare, unsure of how to stay connected…

Let this be your reminder:
You are not a burden.
You don’t have to be “on” to be loved.
You don’t have to fix everything to be a good friend.

Surround yourself with people who create space for your whole self — the joyful, the grieving, the in-pain, the exhausted, the soft, the strong.

You’re not broken. You’re human.
And you’re worthy of friendship — exactly as you are.

With love,
A fellow spoonie who gets it 💛