It’s a Friday night, I’m at home watching some dumb comedy on Netflix. My friends are out — with friends, with partners, living their lives — and I’m at home in the middle of a pain flare, recovering from a week and a half of pure hell with the flu.
Having a pain flare after the flu feels like some kind of cosmic joke. But if I’m being honest, I’m not surprised. Viruses hit hard, and my body is still trying to recover.
When I had COVID back in 2022, I felt like I was dying. I had a fever of 104 degrees. My head throbbed so intensely it felt like it was going to explode. Every joint and bone in my body felt like it had been lit on fire. And as if that wasn’t enough, COVID then destroyed my immune system — quite literally.
Post-COVID, I was left with a Primary Antibody Deficiency. My immune levels were comparable to those of a chemotherapy patient — and I’ve never had chemo.
For the next three years, I was plagued with illness after illness: pneumonia, bronchitis, more upper respiratory infections than I can count, and strep throat at least a dozen times. That’s just naming a few.
I was never a sickly child. Sure, I grew up with migraines and joint pain — but this was different. This was a whole new ballgame. And for three long years, I pleaded and begged my primary care doctor to run labs. To find something. Anything. I knew in my gut something was wrong.
But what was I met with?
“Your labs are normal. You’re just unlucky.”
You read that right. That was an actual message from my former doctor. Unlucky.
I even begged for a referral — just to see someone else who might look deeper — and I was still denied. And while three years felt endless, I know others in the chronic illness community who waited ten years or more to be taken seriously. An entire decade of doubt, disbelief, and dismissal. Let that sink in.
After those three grueling years, I finally found a new primary care doctor.
She listened. Actually listened. She took notes. She asked questions. She spent over an hour with me when she was probably allotted twenty minutes. And that same day, she referred me to an immunologist — who saw me that very afternoon.
Two doctors listening to me in one day? It felt unreal.
That appointment was filled with what ifs and how comes. I laid everything out, unsure if I would be believed again. But she listened. She ordered what felt like sixty vials of blood and ran every test imaginable.
Finally, I thought. I’ll have an answer.
And here’s something people don’t always understand about chronic illness: sometimes we hope a test comes back abnormal. Not because we want to be sick — but because we want to be validated. Because we know our bodies. And we know when something is wrong.
Two weeks later, I went back for my results.
“Primary Antibody Deficiency,” she said.
I looked at my mom, who had come prepared to support me no matter the outcome, and felt a wave of relief wash over me. Not relief that something was wrong — but relief that I wasn’t imagining it. I wasn’t unlucky. My immune system had essentially stopped working.
I tried to hold back tears, unsure how I was supposed to feel.
And this is the part of chronic illness no one warns you about: grief.
The grief of a new diagnosis. The grief of wondering how life will change. The grief of uncertainty — will the treatment work? Will it get worse?
The hardest part of grief, for me, is the what-if.
What if my doctor had listened sooner?
What if I had started treatment earlier?
What would my life look like now?
Those questions can consume you. Knowing someone should have listened. Knowing years were lost.
Chronic illness isn’t just about symptoms and treatments — it’s about what’s lost in the waiting, the dismissals, and the years spent fighting to be believed.
We know our bodies. We aren’t doctors or nurses — but when we say something is wrong, we deserve to be believed. That’s all we want. To be taken seriously. To be treated with dignity.
We often think grief only exists when someone dies — the loss of a person. But grief takes many forms. And those of us living with chronic illness experience it every single day.
Grief that I’m stuck at home tonight, watching the world move on without me.
Grief that my life would look different if I’d been diagnosed sooner.
Grief that my calendar is already blocked for my next antibody infusion — already bracing myself for the exhaustion that will follow, knowing the entire next day will be lost to recovery.
Grief for the plans I don’t make anymore.
Grief for the energy I ration instead of spending freely.
Grief for the version of myself who didn’t have to think this hard about her body.
And somehow, I still manage to hold onto gratitude.
Gratitude that this treatment nearly saved my life. Gratitude that because of these infusions, I no longer get sick at the drop of a pen. That I have some semblance of a life now.
And grief, all over again, for the three years that could have been different — years where I would have suffered less, and lived more, if I’d been believed sooner.
That grief doesn’t exist on its own. It layers itself onto everything else.
It’s overwhelming. On top of fighting insurance, managing symptoms, juggling appointments, injections, and infusions.
But even in the grief — even in the what ifs — I remind myself how hard I fought to get here. How much advocating it took. How many times I kept going when I wanted to give up.
Those of us living with chronic illness are strong — not because we chose to be, and not because we want praise for surviving. We are strong because we have had to become fluent in pain, persistence, and self-advocacy just to exist. We endure in ways that often go unseen.
If you’re reading this while grieving a body that no longer feels like home, a life that looks different than you imagined, or years lost to being dismissed — I want you to know something: your grief is valid. Your exhaustion is justified. And your anger, sadness, and longing are not signs of weakness. They are proof that you care deeply about the life you are still trying to live.
You are not broken for mourning what could have been. You are human.
And even on nights like this — when the world feels like it’s moving on without you — your life still has meaning. Your voice still matters. Your experience still deserves space.
You are not alone in this.
You never were.
And you are worthy of being believed.
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