The Lonely Ghost: Living with Mast Cell Activation Syndrome

The reality of Mast Cell Activation Syndrome in a highly fragrant world. Yes, this is me being honestly raw about how every day looks.

Love languages — often described as how we connect — have become my measure of disconnection. I walk through a world where I exist but can no longer connect. I try, but I move through shadows — a place where human touch, shared warmth, and simple nearness have become distant memories.

Before my illness worsened, I was a counselor. A leader. Someone known for compassion and understanding. God gave me the gift to see people — not just as they appeared, but as they truly were, and even who they could become. My empathy, my ability to mourn with those who mourn, was my ministry.

But Mast Cell Activation Syndrome has stripped me of that connection. Chemicals — perfumes, cleaners, fragrances — can now close my airway in seconds. I cannot touch others, not safely.

There are 10,080 minutes in a week. I spend fewer than five of them in human contact. Weeks pass where I touch no one. And because physical touch is my love language, the absence of it feels like being erased. I am present, but unseen — a ghost moving through crowds, unseen and untouchable.

So I smile and joke, apologizing for the awkwardness of avoiding someone’s hand or stepping back from an embrace. It feels like apologizing for existing. People touch each other — it’s how God designed us. But unless someone makes an intentional effort to bridge the distance, I remain in the shadows.

Words of endearment help some people feel loved. For me, they now echo hollow. The words “air hug” or “I wish I could hug you” cut deep — not because they’re unkind, but because they remind me how far away I am. The friends who could find safe ways to connect often don’t, and the ones who do try soon tire of the sacrifice.

When that happens, I feel it — the shift, the quiet distance. The friendship fades, not from anger, but discomfort. Their families don’t understand, and I’m left apologizing for the effort it takes to be around me. Every apology widens the gulf.

Each night I go to bed believing I’ve reached the limit of what I can bear. Each morning, the distance feels wider still.

There are moments when I escape into the woods — the only place where the air doesn’t hurt me, where judgment and pity can’t reach. But the silence there reminds me of the one thing I still crave: connection.

The hunger for human connection feels like starvation — and I know starvation. I have felt it in my body, but this is worse. This is the starvation of the soul.

People think I’m angry at the world. I’m not. I’m hurting because I’m no longer part of it. And the harder I try to explain, the more I’m judged for how it looks.

I see through people — their pity, discomfort, avoidance — not because I want to, but because my discernment won’t shut off. It’s the very gift that once helped me guide others, now turned into a mirror of pain I can’t escape.

And so I fade further — the counselor, the leader, the friend — into a shadow of the person I once was.

Even in this isolation, I know He is near. Even when others can’t draw close, He can. When human connection fails, God’s presence fills the void. He becomes the steady heartbeat in the silence — the One who sees me when no one else does.

Reflection

We live in a world that idolizes connection yet overlooks the ones who long for it most. To truly reflect Jesus, we must see the unseen — not just their needs, but their humanity.

The lonely and the isolated are not ghosts — they are the heartbeat of compassion waiting to be seen again.