How I have learned to live with a ghost. Living with Chronic Illness in a World That Can’t See the Weight You Carry.

 

Some mornings, my body speaks before I do. Not with words, but with heat. With ache. With exhaustion. It murmurs in my joints and burns behind my eyes. It settles into my skin like fog—always present, sometimes light, sometimes heavy. I move through life in negotiation with it. This invisible companion.

I didn’t always have language for it. Just the sense that something wasn’t right, that my body wasn’t keeping pace with the girl I was supposed to be. The woman I wanted to become. There were days I smiled through work and appointments and dinners while my insides were pulling tight like wire. I grew good at enduring. Good at pretending. That’s what women do, right? Especially Black women. We keep going, because stopping would mean explaining. And explaining takes energy we already don’t have.

By the time I turned forty, I had a full hysterectomy—an act of surrender and salvation. Endometriosis had mapped itself across years of my life, and I was ready to reclaim some of them back. But even relief came with asterisks. I still wake up with fibromyalgia pain, the kind that pulses low and mean. I still navigate the sudden flares of small fiber neuropathy—those quiet, sharp betrayals of my own nerves. My illnesses aren’t gone. They’re just better named.

What’s hard to describe is the emotional weight of it. The guilt of rest. The self-doubt that creeps in when you cancel plans again, or the way loneliness builds when your body becomes your biggest boundary. I grieve the ease I once took for granted. The spontaneity. The dancing for no reason. The long drives with no destination. Chronic illness steals time in pieces. Some days, it feels like it steals me, too.

But here’s what I’ve learned, in all this quiet and recalibration: I am still here. Still her. Still choosing life. Still choosing joy. Still building things with my hands even when they tremble. That’s what inspired the Soothe Collection. It wasn’t about hiding the pain—it was about honoring the life I’m still creating inside it. Each item in the line is a small declaration: of presence, of resilience, of beauty that persists even in the shadow of pain.

So if you see me smiling, know that I earned it. If you see me resting, know that I need it. And if you see me dreaming, know that I believe in futures—even the ones we have to build from a place of hurt. My body might carry invisible battles, but my spirit is not quiet. It speaks in every word I write. Every story I share. Every item I design. And it will keep speaking—as long as I do.

With you always,
Tasha
Founder, Simply Edyn & Co. / Editor, The Commons Dispatch