Grief and Chronic Illness: Mourning the Life You Had Before

The other week, I found myself mindlessly scrolling online when a post from a former colleague stopped me in my tracks. There she was, celebrating another promotion, looking radiant at some industry event, clearly thriving in the career I once thought would be mine too. And just like that, the familiar tightness settled in my chest – that particular brand of grief that comes with chronic illness, mourning not just what I’ve lost, but what might have been.

It’s been over a decade since my fibromyalgia diagnosis, and I thought I’d made peace with how my life had changed. But grief, doesn’t follow a neat timeline. It cycles around, sometimes catching you completely off guard, even when you think you’ve got all the tools to handle it.

Grief with chronic illness is a complex and persistent beast. You’re mourning someone who’s still alive – the person you used to be – while simultaneously trying to build a relationship with who you’re becoming.

I find myself grieving the strangest things sometimes. The ability to make plans without wondering if I’ll feel well enough to follow through. The luxury of waking up and not immediately doing a mental body scan to assess the day’s pain levels. The version of myself who could go to work all day and then head straight out in the evening.

And yes, I grieve the career trajectory that fibromyalgia derailed. Watching former colleagues climb ladders I can no longer reach triggers something deep and melancholy in me. It’s not that I begrudge them their success, but just that their achievements serve as a reminder of the parallel life I sometimes imagine I might have lived, where everything stayed “normal,” whatever that really means.

If you’re familiar with the traditional stages of grief – denial, anger, bargaining, depression, and acceptance – you’ll recognise some patterns in chronic illness grief, but it’s rarely as linear. Instead, it tends to be more cyclical, like waves that ebb and flow.

There’s the initial shock and denial when symptoms first appear. Then comes anger – at our bodies, at the medical system, at the unfairness of it all. We bargain, promising ourselves we’ll eat better, exercise more, try every supplement if only we can get our old life back.

Depression often follows, that heavy realisation that things really have changed permanently. And what about acceptance? Well, that’s not a destination you arrive at and stay. It’s more like a skill you develop, something you practice daily, and some days you’re better at it than others.

What makes chronic illness grief particularly challenging is that it’s often unrecognised. People don’t bring casseroles when you’re diagnosed with fibromyalgia. There’s no official mourning period, no socially accepted timeframe for your sadness. You’re expected to “stay positive” and “fight through it,” which can leave you feeling guilty for grieving at all.

Coping Strategies

Over the years, I’ve developed some strategies that help when grief decides to visit. They don’t make it disappear entirely, but they can make it more manageable.

Acknowledge the grief when it comes. Don’t try to push it away or tell yourself you should be “over this by now.” Grief is a natural response to loss, and chronic illness involves multiple, ongoing losses. It’s okay to feel sad about what you’ve lost.

Limit the comparison trap. I’ve learned to be mindful about my online consumption, especially on difficult days. The scrolling that triggered my recent bout of melancholy? I now recognise it as a potential grief trigger and approach it accordingly. It’s not about avoiding reality, but about protecting your headspace when you’re vulnerable.

Create space for your feelings. I find journaling incredibly helpful for processing these complex emotions. Sometimes I make lists of what I’m mourning alongside what I’m grateful for now. There’s something powerful about getting it out of your head and onto paper.

Seek connection with others who understand. Online communities, support groups, or even just one good friend who “gets it” can make an enormous difference. There’s validation in knowing you’re not alone in feeling this particular brand of grief.

Practical Steps for Difficult Days

When grief feels particularly heavy, I have a toolkit of practical strategies that help:

The gentle day approach. On grief-heavy days, I lower my expectations dramatically. The goal becomes simply getting through the day with kindness to myself. This might mean ordering takeaway instead of cooking, spending time watching nature in the garden, or cancelling non-essential plans.

Movement that feels good. Not punishing exercise, but gentle movement that honours where your body is today. For me, this might be a slow walk in nature, some gentle stretching, or even just standing in the garden breathing fresh air.

Connection over isolation. Grief can make us want to hide away, but I’ve learned that reaching out – even briefly – usually helps. A text to a friend, a video call with family, or even just commenting on someone’s post can remind you that you’re still connected to the world.

Meaning-making activities. I try to engage in something that feels meaningful, even if it’s small. This might be writing, helping someone else in an online support group, or working on a creative project. It reminds me that while my life looks different now, it still has purpose and value.

Professional support when needed. There’s no shame in seeking help from a counsellor or therapist who understands chronic illness. Sometimes we need professional guidance to navigate these complex emotions and this is something that I have found helpful in the past when I have struggled to move through these feelings.

The Both/And of Living

One thing I’ve learned is that life with chronic illness often exists in the “both/and” space rather than “either/or.” I can be grateful for the lessons chronic illness has taught me AND mourn what I’ve lost. I can appreciate the slower pace my condition has forced upon me AND feel sad about missed opportunities. I can be proud of how I’ve adapted AND still grieve my former capabilities.

This isn’t about toxic positivity or forcing yourself to find silver linings. It’s about accepting that grief and gratitude can coexist, that healing isn’t linear, and that it’s possible to build a meaningful life that looks nothing like the one you originally planned.

If you’re reading this while in the thick of your own chronic illness grief, please know that what you’re feeling is valid and normal. The sadness, the anger, the confusion – it all makes sense. Take it one day at a time, be patient with yourself, and remember that healing doesn’t mean forgetting what you’ve lost. It means learning to carry it alongside everything you’re still gaining.

Some days will be harder than others, and that’s okay too. Grief, like chronic illness itself, teaches us that we’re stronger and more adaptable than we ever imagined we could be, even when we don’t feel it.