There was a time when I knew exactly who I was. Living with chronic illness and resilience taught me that life is not either or. It lives in the ‘and’.
I had a fast-paced corporate career that I genuinely loved. I thrived on being busy, on being the social butterfly of being capable and needed. I had ambition, independence and a pretty clear idea of where my life was going.
Then my health changed everything.
A stroke and years of unexplained illness eventually forced me to leave the career I had worked so hard for. It wasn’t a leap of faith into a more high flying role in a new city or country I had often dreamt of. No warning as such, just a dramatic life exit or so it felt but still I convinced myself I was just stressed and needed to slow down..
I didn’t choose to leave that version of my life, it chose me to leave it..
What followed was grief, although I didn’t recognise it as that at the time. I wasn’t only grieving my health. I was grieving the woman I had been, I was angry, I was sad, I felt conflicted in who I was. If I wasn’t the woman with the career, the independence, the energy and the plans, who was I?
Losing More Than My Health
My husband had just recently opened a fitness business, I began helping him there when I felt able to, to prove I was capable and needed. At the same time, my search for answers about my own health took me deeper into nutrition and wellbeing.
I studied. I learned. I became fascinated by the human body, I qualified after years of study as a Registered Nutritional Therapist and Lifestyle Medicine Practitioner.
From the outside, perhaps it looked as though I had successfully reinvented myself.
Inside, I still wasn’t quite sure where I belonged, I battled these demons of identity and to fit in to the box that I had always placed myself in of the corporate world
I knew I had more to offer the world, but I didn’t know what that looked like anymore.
Then, on Christmas Day 2019, I had a heart attack.
I remember lying completely still because I was terrified that if I moved, my heart might somehow pop or simply stop beating.
Tears were silently streaming down my face.
And I prayed.
I prayed to God to save me.
I’d never done that before in my life.
There are moments that divide your life into before and after. For me, that was one of them.
The Diagnosis I Spent Years Looking For
In 2020, after years of searching for answers, I was diagnosed with Fabry disease, a rare inherited genetic condition that can affect major organs including the heart and kidneys.
Finally, so much of what had happened to me had an explanation.
You imagine that getting an answer after years of uncertainty will bring relief.
And it did. But it brought something else with it too. Fear.
Suddenly my mortality wasn’t an abstract concept. I had a disease with a name. I had already had a stroke and a heart attack. I knew my health would need lifelong monitoring and treatment.
I became terrified of dying.
And somewhere in that fear, I became frightened of living too.
I worried about what might happen if I travelled. I worried about making plans. I worried about being away from the safety of what I knew. I worried about what my body might do next.
Fear has a clever way of disguising itself as caution.
Your world can become smaller without you even noticing.
Being “Strong” Becomes Exhausting
People often tell me how strong and resilient I am. I understand why, but being strong can be exhausting.
Sometimes you don’t want to find the positive or be inspirational. You just want to be allowed to feel frightened, tired or angry.
I’ve learned that strength and vulnerability can exist together, just as gratitude and grief can.
Perhaps that’s where real resilience lies.
Living with Chronic Illness and Resilience
For years, I saw life in terms of either/or.
I was healthy or I was sick. Strong or vulnerable. Grateful or angry. Accepting my illness or fighting it.
But real life doesn’t fit neatly into either/or.
It lives in the “and.”
I can have a serious, life-changing illness and have a beautiful life.
I can be frightened about what the future might hold and still be excited about it.
I can have days when my body limits me and still be ambitious.
I can feel incredibly grateful to be alive and sometimes feel furious about the hand I’ve been dealt.
I can miss the woman I used to be and love parts of the woman I’m becoming.
This is what I know to be true!
Acceptance Is Not Surrender
For a long time, acceptance felt too much like giving up.
I thought accepting my illness meant allowing it to win.
Now I understand acceptance differently.
Acceptance is acknowledging what is true without allowing it to become the whole truth of who you are.
Fabry disease is part of my life.
There are treatments and appointments. There are times when my body dictates the pace. There is uncertainty, and there are things I simply cannot control.
And there is so much more.
There are people I love. Places I haven’t seen yet. Food I haven’t tasted. Conversations I haven’t had. Ideas I haven’t created. Work I still want to do.
There is travel, nature, adventure, creativity and ordinary days at home that I have learned not to take for granted.
There are still dreams.
Perhaps even bigger ones than before.
I Don’t Want to Wait for “Then”
I’m 47 now, and I find myself reinventing my life again. I don’t have it all figured out, but I do know I’m no longer interested in waiting for some imaginary point when everything is perfect.
We tell ourselves we’ll travel, make the change or live more adventurously when life settles down.
Then. Then. Then.
Illness has taught me that “then” isn’t promised. I still worry, work too much and get stressed about ridiculous things, but I’m learning to catch myself, come back to where I am and live this life rather than waiting for another version of it.
There Is Still So Much Life to Live
Perhaps that’s what living well means to me now.
Not perfect health. Not endless positivity. Not pretending the difficult parts don’t exist.
It’s being willing to hold all of it. Living in Duality
The joy and the fear.
The grief and the possibility.
The limitations and the dreams.
The woman I once was and the woman I’m still becoming.
I’ve spent years being frightened of what I might lose.
These days, I’m much more interested in what is still possible.
I have Fabry disease. And I have plans. I have limitations. And I have dreams. Sometimes I’m frightened. And I still choose to live.
Maybe that’s where the beauty of life really is.
In learning to live in the “and.”
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