No one talks about the grief that chronic illness brings

Hey, friend, grab your tea and pull up a chair. I want to have an honest conversation about something we don’t talk about enough: grief. It’s not the kind of grief that comes with funerals and sympathy cards, but rather the quiet, sneaky kind that shows up when life doesn’t go the way you’d planned. It’s the kind of grief that comes with a chronic illness diagnosis.

If you’ve ever felt like you should be over it by now or like you’re the only one still struggling with the losses that came with your illness, let me just say: You are not alone.

Over the past 20 years, I’ve struggled with various seasons of grieving. The first one was when I was diagnosed with lupus, because I knew my life would never be the same again. Then I lost my independence, career, and finances, and the list kept growing. I felt deeply lost and was hurting badly. But it seemed like no one wanted to talk about the type of grief that comes with a diagnosis like this, as if people didn’t acknowledge it as actual grief.

When most people hear the word “grief,” they think of losing a loved one, a divorce, or something similar. But what about losing the life you thought you’d have? The career you’d worked so hard for but had to let go of? The independence you once had before your body started setting the rules? The friendships that faded because people didn’t understand what you were going through?

That’s grief, too. And the hardest part? It often goes unnoticed. No one drops off a casserole when you’re mourning the energy you used to have. No one sends a card when you realize you’ll never be the person you were before your diagnosis. It’s the kind of grief that lingers in the background, quiet but heavy.

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Carrying the backpack of grief

I often liken grief to a backpack you never asked to carry. At first, it’s full of jagged rocks: anger, sadness, fear, exhaustion. It’s heavy. Some days, it feels impossible to take even one step forward with it strapped to your back.

But here’s the thing: You do take steps. Little by little, you adjust. Some rocks smooth out over time. Some get replaced with things that bring you comfort: moments of joy, resilience, reminders of the love that still exists. The backpack never disappears; it becomes a part of you. Some days, it’ll feel unbearably heavy. Other days, you’ll barely notice it’s there. And both of those days are normal.

One of the hardest things about grief is that it doesn’t follow a neat, linear path. It doesn’t go away just because you’ve “accepted” things. And it definitely doesn’t mean you can’t feel happiness alongside it. Simply put, grief isn’t a one-and-done thing. It doesn’t come with an expiration date. It shapes us and often changes us, and is something we carry with us into the next season of our lives.

Years ago, I remember, I had a really amazing moment in my life, one of those things I’d dreamed about for years. I should’ve been happy, but underneath it, there was a little ache. It was this whisper of “I wish things could’ve been different.” And for a second, I wondered if something was wrong with me.

But the truth is, grief and joy can hold hands. You can love the life you have now while still mourning the life you lost. You can be grateful for what’s ahead while still feeling the weight of what you had to leave behind. One doesn’t cancel out the other.

So if you’ve been waiting for permission to grieve the things chronic illness has taken from you, here it is. You don’t have to pretend it doesn’t hurt just because time has passed. You don’t have to push it down and act like it’s fine. And you definitely don’t have to feel guilty for experiencing both grief and gratitude at the same time.

So what do we do with it?

We talk about it. We let ourselves feel it. We find safe spaces — whether it’s therapy, journaling, making art, or leaning on people who get it. We remind ourselves that grief isn’t weakness. It’s just love in another form.

And we keep carrying that backpack — because even though it’s heavy, it’s proof of how deeply we’ve lived, hoped, and fought for the life we wanted. And that? That’s something worth honoring.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.