Not Healed, But Living: My Hot Girl Chronic Illness Summer

This summer, I made a choice. I decided I’m done watching the world pass me by from the couch. After four years of living in survival mode with status migrainosus, I’m choosing to live again. Not because I’m cured. Not because I’m pain free. But because I deserve to experience life, even with chronic illness.

I’ve spent the last few summers indoors, dizzy and nauseated, battling pain that kept me from doing the simplest things. I watched the seasons change through my window, wishing I could join in but too exhausted and overstimulated to move. I felt stuck. I felt forgotten. I felt like I was losing myself.

But this summer feels different.

Four Years of Fighting for Relief

For four years I had no medication that helped. I was in daily pain, constantly hovering at an eight to ten on the pain scale. It was relentless. Nothing brought me relief. I tried treatment after treatment and was met with disappointment every time.

Worse than the pain were the doctors who made me feel like I was the problem. I was told it was all in my head, that I was being dramatic, that I just needed to manage my stress. I was gaslit and dismissed. And yet I kept fighting. I knew something wasn’t right, and I knew I deserved better care.

Eventually, I found a neurologist who actually listened. In June, we made some major changes to my treatment plan. I started Nurtec and increased the dosage on my other meds. It’s not a miracle, but it’s working.

I am still in status migrainosus. I still live with pain every day. But my daily pain has gone from a consistent eight or nine to a six or seven. That may sound like a small shift, but to me, it feels like the biggest breath of fresh air.

What Living Looks Like Right Now

Living with chronic illness is never going to look like it does in the movies. It’s not carefree or picture perfect. It’s real. It’s messy. It’s intentional.

For me, it looks like this:

I’m sweating through my outfit before I even make it out the door. I’ve got my mini fan in one hand and my emergency meds in the other. I keep my sunglasses on inside the bar because the lights are just too much. My edibles are in my purse just in case the pain spikes while I’m out. And even with all that, I’m still smiling because I’m finally here.

This summer, I’m dressing up even if I can only stay for an hour. I’m lounging by the pool with a good book. I’m trying new restaurants and making memories with friends. I’m letting myself feel cute again. I’m allowing joy to sit beside my symptoms instead of waiting for them to disappear.

What This Summer Means to Me

This is the first summer in years where I don’t feel like I’m surviving every second. I’m still healing. I’m still working closely with my neurologist to get better control of my migraines. But for the first time, I feel like I’m stepping back into my life instead of just watching it happen without me.

This summer is not about perfection. It’s about permission.

Permission to live with pain.
Permission to laugh even when I’m still healing.
Permission to be both strong and soft.
Permission to take up space, even in a body that is tired and hurting.

I have learned that healing does not mean waiting for the perfect moment. It means finding joy wherever you can and taking the moment anyway.

To Anyone Still in the Thick of It

If you are in the dark place right now, I see you. I’ve been there. I know what it’s like to be stuck inside while everyone else is living their lives. I know what it feels like to cancel plans, to lie in bed crying, to feel like you’ll never feel okay again.

I want you to know that you are not alone. You are not broken. You are not making it up. You deserve help. You deserve to be believed. You deserve good days and better care.

Keep advocating for yourself, even when it’s hard. Keep holding on to hope, even when it feels distant. And when your summer comes, let yourself enjoy every little bit of it.

Right Now, I’m Choosing Life

No, I’m not healed. But I’m living.

And that’s more than enough for me.

If you see me out this summer, just know it took everything to get here. And I’m not going to waste a second of it.