Chronic

It’s not easy.

God, it’s not easy.

Sometimes I think it might be the hardest, damnedest job of my life, learning how to live in this body. This itchy, aching, flaring, cracking, confusing body. Some days I do everything right. I eat like a nutritionist's Pinterest board. I meditate. I sleep eight hours with white noise and a sleep mask like some someone who's really got it all together. I try.

And yet.

One tiny trigger — a silly cold, a wave of anxiety, a bit too much sugar — and I’m back paralysed in my bed, breath shallow, chest tight, hands inflamed, wondering how the hell I ended up here again. I lose whole days. I cancel plans with vague excuses. I ghost people I love because I can’t face explaining myself again.

Psoriasis. Psoriatic arthritis.

Two chronic illnesses. One body. My body.

A body that forgets it belongs to me.

And I hate to say it, but sometimes I feel like I’m the one who’s forgotten it, too.

It’s hard to describe what it’s like. Not just the physical pain, but the emotional dissonance of looking in the mirror and not recognising your own reflection. When your face is swollen, red, peeling. When you’ve scratched so hard in your sleep that your skin is raw. When you smile for a picture and your jaw hurts. When you feel ugly in a way that’s not cute or self-deprecating, just true.

You lose track of who you were before the pain. You forget what it felt like to just... exist.

It’s isolating.

So. Damn. Isolating.

Because it’s not just the illness. It’s the invisibility of it. The way people say, “But you look fine!” like it’s a compliment. Like I should be proud of hiding it well. They mean well, I know. But it hurts. Because many days, I am not fine. Many days, I am hanging on by a thread that feels like it could snap with the wrong type of weather.

Some weeks I feel okay. Some weeks, I even forget for a moment. I go out. I laugh. I put on makeup and take selfies that make me feel like someone else, someone shiny and untouched. But then I scratch my face raw in my sleep. I can’t open a jar because my hands don’t work. I log onto a Zoom call and feel the heat crawl up my neck because even though I look “normal,” I can feel a flare beginning in real time. I panic quietly and professionally, because I can’t hide.

I miss out on so much. The little things. The big things. Spontaneous plans. Road trips. Dancing until midnight. Sometimes even just being touched. There are nights I lie in bed crying because I know my skin burns too much to be held and I wonder if it will ever stop or if there will ever be someone whose touch would stop the burning.

It’s become harder to make friends when you can’t always show up. When consistency isn’t a promise you can make, no matter how much you want to. I’ve watched myself disappear too; from dinners, from messages, from my own life. There are days when it feels easier to isolate than to explain, easier to withdraw than to risk being misunderstood.

I don’t want to be that person. But sometimes I am. Sometimes I’m the person who cancels again. Who cries in the shower because her joints don’t work. Who puts makeup on an open wound just to feel halfway human.

And sometimes, I hate myself for it. For the vanity, the exhaustion, the sheer neediness of it all.

But I’m learning. I’m learning to stop hating myself for being sick. I’m learning to stop hiding. There was a time I thought I could out-discipline my disease. If I just ate better, tried harder, stressed less, I’d be magically healed. I wanted so badly to believe it was my fault, because if it was my fault, I could fix it. But it’s not. It’s a part of me, yes, but not because I failed. And that realisation… it’s a grief and a liberation all at once.

I want to live a beautiful life, even in this broken body.

Especially in this broken body.

I want to be the person who tries anyway. Who shows up late but shows up. Who lets people see the scars and the redness and the fatigue and the fear. I want to be the person who says “I’m in pain” without apologising. Who lets herself rest. Who lets herself be loved.

Because I do try. I try to show up with love. I try to forgive myself when I spiral. I try to let people in, even when my skin is cracked and I want to crawl out of it. I try to remember that my friends don’t care about the spots on my face or the flakes in my hair or the way I wince when I stand up. They love me. All of me.

Even the itchy, angry, stressed-out, swollen version of me.

Maybe especially her.

The truth is: nobody will ever judge me more harshly than I judge myself. No stranger on the bus is thinking I look disgusting. They’re too busy scrolling their own lives. And even if they did stare, they wouldn’t see half of what I see. They don’t see the years of shame, the 25-year-old who cried over scabs, or the 30-year-old who lied about migraines just to avoid being seen.

But I see her.

And I’m trying to love her, too.

There are days I feel defeated. Days I wake up bleeding and limping and angry at my own skin. Days I feel like my body has betrayed me. But I also know defeat doesn’t mean I’ve lost. It just means I get to choose again. To choose compassion. To choose softness. To choose myself, even when I don’t feel like it.

Because this thing — this chronic, complicated, shape-shifting beast — it’s part of me. But it is not all of me.

Because yes, I’m still soft.

I’m still strong.

I’m still beautiful.

I’m still mine.

And even though I might wake up tomorrow in pain, and I probably will, I will meet it like an old, familiar shadow. One I didn’t ask for, one I’d gladly give up, but one I’ve learned to walk beside.

Chronic illness is not just about pain.

It’s about grief.

Grieving the life you thought you’d have. Grieving the version of yourself you don’t get to be. Grieving in silence because you don’t want to be a burden.

And still, even in all that grief, there is love. There is slowness. There is grace.

I laugh harder now. I notice the light more. I cry with my whole chest and mean it. I find joy in strange places: a single good skin day, a walk without pain, a meal that doesn’t hurt me. It’s quieter, this joy. But it’s real. And in some ways, it’s deeper than it ever was before.

So no, it doesn’t get easier. But it gets familiar. I get better at being with it. At not fighting it so hard. At letting myself be, even when I’m flaring, even when I’m exhausted, even when I feel like I’ve disappeared from my own skin.

That’s the work.

That’s the miracle.

That’s chronic.

If you’re in it too — if you’re in the thick of it, the lonely, raw, invisible mess of it — I see you.

You’re not alone. You’re not too much. You’re not a burden.

You’re surviving something most people can’t see.

And that’s a quiet kind of badass.

Thank you for reading. Thank you for witnessing me.

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Thank you for tuning in to Chasing Sunshine, my personal blog where I share stories about my experience and extensive journey to find self-love, body positivity and reconciliation with a chronic illness.

My hope is that by sharing my stories, I can inspire others to see their own worth, find their voice, and celebrate who they are. This is my space to reflect, connect, and spread a little sunshine - one post at a time.

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