Grief and Lupus: The Forgotten Symptom of Chronic Illness

Grief is the Forgotten Symptom of Lupus

By Macenzie | Let’s Talk Lupus

Throughout my two years of writing for Lupus Canada, one theme has emerged in every conversation I’ve had with people living with lupus and those whose lives have been touched by the disease: grief.

For many of us, a diagnosis can provide a sense of validation or relief, because for so long our symptoms were dismissed as ‘in our heads,’ dismissed or misdiagnosed.

But with that diagnosis often comes the overwhelming weight of grief.

We grieve the life we had before our diagnosis, who we were before lupus, and the future we once imagined for ourselves. Suddenly, everything has changed, and we are left navigating a life that feels very unfamiliar and, frankly, unfair.

When I was first diagnosed at 19 years old, I remember the initial grief of the diagnosis feeling almost like a blip. I had imagined that receiving the diagnosis, and the finality of it, would be the hardest part.

I mourned the fact that my body was failing me and that lupus was something I would have to live with indefinitely.

But the worst part was everything that came after. It was grieving the little things, the moments when I forgot there was stuff I could no longer do.

I was reminded that what came so easily to everyone else no longer came easily to me. 

It’s telling your friends you can’t go out on a Saturday night because you’re in too much pain, while trying to say it in a way that doesn’t make you seem depressing or like you’re asking for sympathy.

It’s turning down opportunities you once would have jumped at, like going for a hike or a bike ride, because you’re in the middle of a flare and can’t risk spending time in the sun.

But, in my experience, the hardest part has been losing my sense of self.

When everything hurts, you stop wanting to do the things that make you, – you.

For many of us, grief becomes another symptom of lupus, one that rheumatologists and doctors rarely talk about.

Recently, after eight years in remission, the comfort and predictability I had come to know with my lupus were suddenly upended. A new flare brought an entirely different set of symptoms. Reminding me that even after years of stability, lupus changes without warning or asking for permission.  

During the first week of my returning flare, I was overwhelmed by a flood of emotions. There was that familiar feeling that something wasn’t right, coupled with the sinking dread of watching my body start to eat itself alive after being stable for so long.

I couldn’t help but blame myself. I wondered if I had somehow brought this on by not eating well, being too active, or not active enough. I searched for a reason, hoping there was something I could have done differently.

But more than anything, I was consumed by a profound sense of loss.

Naively, I really hoped that I would stay in remission for the rest of my life. I had become very comfortable living with what my ‘lupus looked like.’ 

I had found a rhythm and a sense of stability.

Then, almost overnight, everything changed.

I felt as though I was meeting my disease for the first time all over again.

For many of us, grief becomes another symptom of lupus, one that rheumatologists and doctors rarely talk about. 

They prepare us for the physical realities of the disease: the hair loss, kidney complications, joint pain, inflammation, and fatigue. But they don’t always prepare us for the emotional weight that can accompany a chronic illness, the persistent grief, loss, fear, and sadness that can quietly become part of everyday life.

Many of us carry this burden quietly and without drawing attention to it, when in reality we should be shouting from the rooftops and shaking our fists at the unfairness of it all. 

Despite everything we endure, we remain steadfast in our resilience. We keep moving forward, adapting, hoping for better days, and believing that life can bend back toward joy. 

Conversations within the lupus community have become a source of comfort, offering solace and understanding in ways that only those with shared experiences can.

It is a blessing born from an undeniable hardship.

We are part of a club that nobody ever wants to join, yet within it we find friendship, compassion, and people who truly understand the weight we carry.

We are full of joy, laughter, and a love for life. But sometimes, lupus can make those parts of us harder to find, but it doesn’t erase who we are.

In our darkest moments of grief, we lean on one another, helping each other find hope and, eventually, a little sunshine again.

You Are Not Alone

Living with lupus can impact your emotional well-being as much as your physical health. iaf this story resonates with you, explore Lupus Canada’s support resources, patient stories, and educational content to connect with others who understand what you are going through.

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Let’s Talk Lupus: Conversations with Macenzie