The Grief That Doesn’t Come With Casseroles

Grieving the woman that chronic illness took

I just love daisies. (Photo by J M on Unsplash)

Before I knew the names of my diseases, I knew what it felt like to be ignored by people who were paid to care. I was dismissed, disbelieved, and doubted. All because they weren’t open-minded enough to figure out what was wrong with me. I started getting sick as a toddler. I wasn’t diagnosed until over three decades later.

It was a long run of invisibility and invalidation despite very real symptoms.

In 2022, I experienced tremendous loss. In a year, I lost my mom, stepdad, sister, and four others that were chosen family. I was falling with nobody to catch me. My safety net was shredded. I felt like I was flapping with broken wings over a bottomless pit, wondering how long I could keep up before I gave up from exhaustion and fell.

However, my grief didn’t begin when they died. Despair didn’t happen just at the funerals. It reared its head in cold exam rooms, while I was misdiagnosed, gaslit, and dismissed.

My trauma came with a paper gown and a whole host of dismissals. I was too young to have that much nerve damage. I was too sensitive to pain. Too hyperallergic to everything. It was somehow my fault, when I had no control over what was happening to me — a rare white blood cell disease, amongst over a dozen other conditions.

“But you don’t look sick.” What a double-edged sword.

Nobody warns you that chronic illness is a story of grief. Not at first. They talk about your “chronic illness journey” as if it’s some sort of adventure. Instead, the journey is about learning to endure. Nobody tells you this journey will bring you to your knees. My journey took my dreams, my appetite, and some days, my hope.

You learn to grieve your life as you’re living it.

I grieved for myself. I grieved every version of me that was wiped out when I became chronically ill. The woman who would have been someone. The woman who might have carried children. The woman who would have made a large mark in the world — an imprint on the Universe.

Instead, I beg to be seen. When you’re chronically ill, people don’t mourn those things with you. They ask if you stretched and tried yoga. Then they turn away, because they can’t fix you and your pain makes them uncomfortable.

No sympathy cards arrived when I lost the ability to work or my vocal cords were damaged.

For sure they don’t bring you any casseroles.

I remember the version of me who could run, who could sing like nobody else, and who could finish a sentence without forgetting her words. Nobody cares that I cried in the shower because I nearly fell getting in and can’t lift my arms above my head. And they certainly didn’t care when I lost most of my hair, but they stared and asked questions in order to satisfy their curiosity. Not to show empathy.

Death happens, and you grieve. Chronic illness makes you grieve it all, every day, in real time. It’s not one great tragic event. It’s a thousand small ones. And people still think that I chose this.

Grief isn’t just sadness. It’s anger, and numbness, and everything in between. It roils and burns inside you, but you can’t let it out. If we do, people think that being in a bad mood is really us being negative about our suffering. Sometimes we want to be human, too.

And fuck yes, we get to have those days. The ones where we say when will enough be enough? We scream it inside ourselves, yet silence is our answer.

I’ve buried more versions of myself than I can count. I will never fully know those women, but today I’m comfortable in my broken body. The soul that sits inside it is strong.

I’m still grieving. Still writing, still fighting. Still making my mark in the world, though perhaps not at the speed I once moved at. It gives me more time to appreciate the wonderful things around me. Time still flies, even if the days are long.

I’ve learned more about myself, my strength, and my resilience. I can get through burning skin, screaming joints, migraines, and muscle cramps all at the same time. I can get through the heartache from the solitude that chronic illness brings.

Keep your casseroles.

Instead, please ask what you can do to learn about my illness, or help in a way that means something to both of us. I’m still the same soul, even if the package looks different.

Grief will still come, sure as the sun will rise. I will meet it with the knowledge that I survived yesterday, so I will make it through the pain of today. Perhaps tomorrow the flare will be over, and I will be able to smile without a grimace underneath.

Either way, I will make my mark.