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September 25, 2024

Navigating Ongoing Grief: Chronic Illness and the Unspoken Losses - a lived experience story

Grief is often discussed in the context of loss: the loss of a loved one, the loss of a job, the loss of a dream. It’s a natural response to significant change or upheaval in our lives.

Illness, depression, and grief
This content has a custom transcript:

[Image description: A fair-skinned tattooed woman with brown hair tied back in a ponytail takes a mirror selfie. She wears glasses and holds a walking stick, dressed in a matching black and white triangle pattern sports top and shorts].

Grief is often discussed in the context of loss: the loss of a loved one, the loss of a job, the loss of a dream. It’s a natural

response to significant change or upheaval in our lives.

But what about grief that doesn’t fit neatly into a single event, grief that lingers and compounds over time?

Living with chronic illness has introduced me to a different kind of grief—a grief that isn’t confined to a single moment but

unfolds over days, weeks, and years. It’s the accumulation of losses that chips away at my sense of self and stability.

The losses from this illness, on top of everything else life throws our way, compound everything.

When you have multiple illnesses, the compounding effect becomes all-consuming.

Each condition brings its own set of challenges, medications, appointments, and adjustments to daily life. It’s a juggling act

where the stakes are not just managing symptoms but maintaining any semblance of normalcy.

There’s a weight to this grief that’s hard to articulate. It’s not just about mourning what once was; it’s about mourning what

could have been and what might never be. The dreams deferred, the plans altered, the opportunities missed—they all add

up. It’s a grief that seeps into every corner of my life, colouring even the simplest of tasks with a tinge of sadness.

One of the most challenging aspects is the ongoing nature of this grief. Unlike traditional grief where there might be a

sense of closure or acceptance over time, the losses with chronic illness can feel relentless. It’s a constant cycle of

adaptation and acceptance, followed by new challenges and setbacks.

Sometimes, I find myself needing to "down the tools”, as if coping were a job in itself that I could take a break from. It

doesn’t change the situation, but it gives me permission to acknowledge my exhaustion and vulnerability. It’s okay to be

tired. It’s okay to ache for connection and comfort. It’s okay to feel frustrated at the world and the unmet needs that seem

to pile up.

In these moments, self-compassion becomes paramount. It’s not about being in a super self-love vibe all the time; it’s

about gently reminding myself that it’s okay to feel what I’m feeling. That my feelings are justified, valid and shared by

others who are also struggling with their own versions of grief and loss.

The darkness of grief can sometimes feel overwhelming, like tunnel vision where it’s hard to see any light or hope. But

even the smallest flicker of light is worth holding on to. Whether it’s a kind word from someone else in the chronic illness

community, a moment of respite, or simply acknowledging my own resilience in having weathered similar storms before—

these are the lifelines that help me navigate through the darkest moments.

It’s important to remember that I’m not alone in this experience. There are others out there feeling similar emotions, facing

similar challenges. Connecting with the universality of human struggle brings a sense of solidarity, reminding me that

these feelings, as isolating as they may seem, are shared by many.

So, if you’re navigating similar waters, know that it’s okay to not always be okay. It’s okay to grieve, to feel angry, to yearn

for what seems out of reach. And it’s okay to seek support, to lean on those who understand and offer care without

judgment.

In the midst of ongoing grief, finding moments of peace and acceptance can feel like victories. They remind us that

despite the hardships, we are resilient. We are worthy of love and compassion, especially from ourselves. And while the

journey with chronic illness may be marked by grief, it’s also marked by strength, courage, and the capacity to find light in

even the darkest of times.

Author bio and social media handles

Instagram handle: @laurenmayy_

Lauren is a proud LGBTQIA+ woman with multiple lived experiences of disability including chronic illness and

neurodivergence. She is passionate about disability inclusion, creating community and uses her background within the

mental health and disability sphere as a way to advocate and strive for change in social attitudes towards disability.

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