Growing Around Grief: The Chronic Illness Experience

Something that's been coming up in my work recently (and is pretty much always present) is grief. Not the kind that comes with a funeral and sympathy cards, but the sneaky, recurring kind that shows up when you're living with chronic illness.

Things like birthdays, Christmas, weddings for most people, are just normal things to look forward to. But for people living with chronic conditions, these days often bring a fresh wave of that familiar, sick feeling when you realise, yet again, that your experience isn’t what you thought it was going to be.

The Grief No One Talks About

The thing with chronic illness grief is that its not a ‘get through it and get over it’ kind of situation. Lots of us know about grief like it’s a ‘thing’ you do. You go through those famous stages – denial, anger, bargaining, depression, acceptance – and then you're "done." You've "processed" it. Time to move on! Ehhh, not quite.

When you live with chronic illness, grief isn't something you process once and then file away.

Got a new symptom? Hello grief. Having a flare when everyone else is at that wedding? Welcome back, grief. Had to cancel plans for the fourth time this month? Oh look, grief brought a friend called guilt this time.

Growing Around Your Grief

One theory I love sharing with my clients is the "growing around grief" model. It's way more accurate for chronic illness than the typical stages model.

Picture your grief as a ball in a jar. At first, when you're newly diagnosed or experiencing a significant loss of function, that grief ball is HUGE. It fills the whole jar that is your life. Every thought, feeling, and experience bumps up against it.

But then over time, the jar grows bigger. The grief ball doesn't necessarily shrink (though sometimes it does), but your life expands around it. You build new experiences, new ways of finding joy, new identities and connections that make the jar bigger.

The grief is still there. It always will be. But it doesn't dominate the space anymore.

And this isn't a linear process! Sometimes that grief ball swells again, like maybe after a new diagnosis, or when you have to use a mobility aid for the first time, or when you see your friends hitting milestones you can't pursue in the same way.

That's not you failing at grief. That's just being human.

Growing around your grief

The Milestone Mess

Speaking of milestones, we can’t bypass that special kind of grief.

There's something uniquely painful about watching life's “traditional” markers pass you by or look completely different than you expected. Getting married but having to limit your celebration because of energy constraints. Missing your child's school plat because you're in a flare. Watching friends advance in careers while you're fighting for accommodations or unable to work at all.

Society sets up these expectations of what life "should" look like, and chronic illness often forces you off that path. And it hurts.

I see this pain in my clients all the time. The grief of "I should be there by now" or "Everyone else is doing X and I'm just trying to shower regularly."

But here's what I want you to know: those "shoulds" are a load of s**t.

Your life isn't less valuable or meaningful because it doesn't follow the expected timeline or pattern. Your path is your own.

When Grief Comes Knocking Again

So what do you actually DO when grief shows up (again) at your door?

First, stop trying to slam the door in its face. As nice as it might seem to just avoid it, the more you try to push grief away or tell yourself you "shouldn't" be feeling it anymore, the more persistent it gets.

Instead, make some tea, pull up a chair, and say "Oh, it's you again. Come on in."

Some practical ways to sit with your chronic illness grief:

• Validate it: "This is really hard. It makes sense that I feel sad/angry/cheated."

• Name it specifically: "I'm grieving my athletic abilities today" or "I'm grieving the spontaneity I used to have."

• Find your people: Connect with others who get it – whether that's online communities, support groups, or therapy with someone who specialises in chronic illness (hint hint).

• Create grief rituals: Write letters to your pre-illness self, light candles on diagnosis anniversaries, or create art about your experience.

• Look for the growth: Not in a toxic positivity way but genuinely notice how your jar has expanded around the grief over time.

You're Allowed to Feel This Way

Here's my most important point: your grief is valid. All of it. The big waves and the little ripples. The grief over major life changes and the grief over seemingly small things (like not being able to wear your favourite shoes anymore).

Living with chronic illness means coexisting with loss. Sometimes that coexistence is peaceful, and sometimes it's a full-on war. Both are okay.

Your chronic illness has taken enough from you physically. Don't let it take away your ability to feel all your feelings too.

Moving Forward (Not "Moving On")

I don't talk to my clients about "moving on" from grief. That implies leaving it behind, which isn't how chronic illness grief works.

Instead, we talk about moving forward with it. Carrying it with you, but not letting it drive the car.

Moving forward might look like:

• Finding accessible ways to still experience joy

• Redefining your values and what success means to you

• Building strong boundaries that protect your energy

• Creating new traditions that work with your limitations

• Challenging society's ableist expectations instead of yourself

  
  

The grief of chronic illness is real. It's ongoing. And it's not something you need to "get over."

But it doesn't have to consume you either.

Your life can expand around your grief. Your jar can get bigger. And while the grief ball might always be there, it doesn't have to be the only thing in your jar.

If you're struggling with chronic illness grief and need a place to process it without judgment or toxic positivity, I'm here, as always, and I’d love to hear from you.

Kirsty x