Between the Flares: A Turning Point

I haven’t written here in a while.

Not because I don’t have anything to say — but because life has been pulling me in different directions, and lately most of my energy has gone into growing something new.

On November 6, I started TikTok with 98 followers.

Today, I’m just over 2,000.

That might not sound impressive in influencer terms, but for a space like chronic illness — where growth is slow, quiet, and deeply personal — it feels huge. And honestly, it’s been exciting in a way I didn’t expect.

I want to be clear about something — because people often confuse the two.

I live with two different conditions.

I was born with arthrogryposis, a congenital condition that affects how my joints move and how I walk. It’s not an illness I “developed” later in life — it’s how my body has always been built.

I also live with Familial Mediterranean Fever (FMF), a chronic autoinflammatory disease that causes unpredictable flares, pain, and exhaustion. This is the condition that ebbs and flows — one day I can feel okay, and the next day I don’t.

They are different conditions.

But they both shape how I move through the world.

I’m not a makeup influencer.

I’m not a food creator.

I’m not here to perform or sell perfection.

I’m here because living in a body like mine forces you to learn things most people never have to think about.

I’ve carried certain thoughts since childhood.

Why was I always heavier?

Why did people stare when I walked?

Why did I feel embarrassed taking up space?

Those thoughts don’t disappear with age. They settle in. And unlearning them — especially at 53 — isn’t about confidence quotes or pretending they never existed. It’s real work.

I’m still shy not shy in my personality but in my walk. If that makes sense.

I’m still unlearning the instinct to shrink.

I’m still teaching myself that how I walk doesn’t need permission.

At the same time, I carry a lot.

I take care of my family.

I support my husband’s business behind the scenes.

I help keep everything moving — even on days when my body doesn’t want to cooperate.

Somewhere in all of this, I realized something important:

I’m at a pivot.

Not a breakdown.

Not a crisis.

A turning point.

I want to be happier.

More present.

More grounded in who I am — not who I was taught to be.

I have two things people might assume are “against” me:

arthrogryposis and Familial Mediterranean Fever.

But I don’t see them that way anymore.

These are the very things that allow me to connect, to speak honestly, and to walk alongside people who are navigating their own invisible and visible battles.

That’s why I’m writing again.

That’s why I’m sharing — not as an influencer, but as a human being figuring it out in real time.

If you’re walking a road you didn’t choose…

If your body rewrote your plans…

If you’re standing at your own quiet turning point —

You’re not alone.

You can find me on TikTok at @betweentheflares.

Maybe we can navigate this together.