Ageing & Chronic Illness: Time Lost & A Life Unexpected

I’m turning 38 on Friday and my life looks nothing like I thought it would at this age. In fact, I think if that wee girl in the photo above could see us now she’d be in for a shock.

There’s something about birthdays, or really any event that marks a passing of time, that makes the chronic illness grief hit harder than ever.

People like to tell us we shouldn’t dwell on the past and on our pre-illness selves but I find that impossible, because that version of me is still in there, along with all the hopes and ambitions she had for her life. By 38 I thought I’d have a couple of kids, still be living in Italy, still teaching. I thought I’d have had another marathon or two under my belt, and lots more travel and hiking photos to add to my collection. I just thought I would have done a lot more, you know? Lived more.

I think a lot of us find birthdays a bit complicated as we get older, but I think for those of us with chronic illness it’s amplified. For me, there’s always a sense of time lost, a reflection on how many years of your life you’ve lost to simply trying to survive all the sickness and pain, and all the oppressive ableism that comes with it. I look around me and I see all the things my non-sick peers are doing, and I feel like I don’t have much to show for my 38 years on the planet.

And yet at the same time, I don’t really feel my age. Objectively, I know I’m 38 of course, I look in the mirror and I see the visible signs of ageing - the grey hairs starting to come through thick and fast, the lines around my eyes and my mouth. Signs of years lived, and yet they are years I don’t really feel I experienced. It’s like someone hit fast forward and I missed all the good stuff in between. I’m turning 38 but I don’t feel like I lived the years that are now behind me. I think often about who I would’ve been by now, had my life not been derailed by chronic illness and had the last 5 years especially not been purely about survival. I wonder what version of myself I would see in the mirror today, had things gone differently. There are times when I feel like life kind of stopped at the age I was when I got sick.

But the years continued in earnest anyway and now here we are, and life looks nothing like I thought it would. It’s so very different and so much smaller than I had ever hoped for, and there is a lot of legitimate grief in that. Being chronically sick is very hard, there’s no sugar coating that. I don’t think little me could really imagine quite how hard it would get at times. And yet, I would remind her that we are lucky and privileged in so many ways, and that there are still pockets of joy that sustain us. And that it’s ok to feel both the grief and the joy together.

I’d tell her that we may not have all the things we hoped for, but we do have a voice. And we can use that voice to help others, to connect and to build community. And that the same anger she used to feel about injustice, even as a wee tiddler, is still there and that I’m doing my best to channel it for good.

I’d tell her that alongside the grief comes an appreciation for the small things in life, things that other people take for granted - a really well made cup of tea, bees working in the garden, a happy dog snoring on the couch. I’d tell her about the friends that stayed, grew and adapted alongside us as sickness reshaped our life. I’d tell her about the new friendships made - friendships that transcend screens and miles - and how life-saving and sustaining they are. I’d tell her about the partner who holds our hand through it all, the family who love us and the pets who drive us up the wall but whom we wouldn’t be without. I’d tell her that she might not get to be a mum but she gets to be an Auntie, and her nieces will be the absolute lights of her life.

I’d tell her that while we lost a lot, we are still rich in so many ways and that in all the mess of grief, loss and hard-won joys there are hundreds of thousands of people navigating the same choppy waters, and that we all keep each other going somehow.

I’m not sure what she would make of our life at 38, I know there’s so many things that her and I both hoped for that have been lost to us; I know that life is so much smaller than either of us would’ve dreamed, but I’d like to think she’d be proud of us all the same.

She would be devastated to learn that we didn’t marry Rick O’Connell from ‘The Mummy’ but we can’t have it all, can we?