Finding My People on TikTok

I haven’t written here in a while, and honestly… I’ve missed this space. Life has been a whirlwind. A good whirlwind, surprisingly. A confusing one, too. So today feels like the right moment to sit down, breathe, and share where I’ve been.

Lately, I’ve found myself on TikTok more than anywhere else. I never expected that little app to become a lifeline, but here I am — finding people who actually get it. People living with chronic illness, people fighting invisible battles, people who don’t need me to explain the difference between “tired” and chronic tired.

It’s wild how misunderstood that is.

Someone says, “Oh, I’m tired too,” and they mean they didn’t sleep well.

But I know my body. I know the difference. I know what it feels like to wake up exhausted before the day even begins… and I know what it feels like to be tired because I stayed up too late. One is human. The other is illness. They’re not the same.

And on TikTok, for the first time in a long time, I don’t feel like I’m shouting into the void. I’m not explaining myself to doctors who dismiss me or friends who say the wrong thing without meaning harm. I’m surrounded by people who nod, who comment “same,” who drop a heart because they know that some days a heart is all we have to give.

That community has been healing.

Since starting colchicine, I haven’t felt that bone-deep exhaustion that FMF brings. In a strange way, feeling “normal” lately has scared the crap out of me. Because anyone who lives with a chronic illness knows… when things feel too good, you start looking over your shoulder.

Is a flare coming?

How long will this last?

Is it finally my turn to catch a break?

That PTSD — the medical trauma, the years of not being heard — it never fully goes away. It sits quietly in the background, reminding you not to get too comfortable.

But here’s the truth:

I’m trying.

I’m trying to enjoy these calmer days.

I’m trying to lean into the hope that maybe I’m finally on the right path.

I’m trying to celebrate this strange, exciting moment of feeling like myself again.

And I want to say I’m sorry for disappearing from the blog. I didn’t forget about this place. I’ve just been navigating a new chapter — one where I talk more openly, where I show the world the real me, where I’m actually being heard for the first time in a long time.

If you’re reading this… thank you.

Thank you for being here through the ups, the flares, the exhaustion, the fear, and now this little wave of something that might be hope.

I’ll be back.

I promise.

There’s so much more of this journey to share.

With love,

Deborah