Diagnosis can bring devastation, but after 10 years living with a pretty big one (heart failure, post misdiagnosis of SCAD), I have learned that it doesn’t bring only devastation…
There are times in life when things take a turn for the worst, and times in life when things take a turn for the better because of the former.
Recently in Ireland we have experienced the death of one of the most incredible Patient Advocates the country has ever seen.
Vicky Phelan was diagnosed with cervical cancer in 2014. But what no one expected was that not only would she exceed the 6 to 12 months prognosis she was given, but that during that extra time, she would expose the medical mismanagement and attempted cover up of her own and numerous other previous inacurate cervical smear test results, which contributed to the terminal diagnosis of hundreds of young women in Ireland.
No one would ever want to be in such circumstances, but the reality is many of us every year end up with a diagnosis and suddenly have our lives thrown upside down.
I have written many times about my own illness, misdiagnosis, and its bringing me to death’s door, about the losses that came with it, the challenges, the legacy for the rest of my life, the consequences, the fallout (see Blog archive for more)…
… but there have also been the green shoots, the good things that grew out of it and because if it.
There are the things that would never have happened had I not been ill… the family bonds grown tighter, the strengthening of my faith, the chance to meet so many wonderful heart patients, to have so many of them dear friends too.
And then in late summer 2022, 10 years after all the cardiac illness I went through… (fyi perspectives in 10 years on… ) and all the sorrow and loss that came with these illnesses, and after five years of working as an independent heart patient advocate, a new opportunity came my way, to begin working full time for Ireland’s leading heart charity, the Irish Heart Foundation, in the capacity of Advocacy Campaign Manager, to advocate for heart and stroke patients in Ireland on a national basis.
Had I not been through the horrors of my own cardiac illness, I would certainly not be in this role now.
I’m not saying having a heart illness is/was a good thing, or that everything is so happy ever after now, yes there have been many negative impacts from my own diagnosis and still are… I still live with the condition heart failure afterall!
But what I am saying is that we have no comprehension of how things in life will turn out, and that when we receive a diagnosis and think we can write the script for the rest of our lives, (usually one of ‘misery ever after’), come the surprises, the unexpected goodnesses that are by products of the misery, the opportunities that might never have happened had the misery not been part of the journey.
Despite the land of no hope you might feel that you are currently dwelling in, you are simply passing through its tunnel. There is more to come. Yes there will be future challenges, but it wont be only challenges.
I write about this today to encourage all of you going through the rough times. I know what that’s like and how I longed for someone to show me a bit of hope when I was there, to show me that good things were still possible in life, that I wasn’t doomed to eternal misery.
It’s not that everyone ends up working as a Patient Advocate, but that good things will come into your life because of this challenge. I’ve heard patients say they are more conscious of spending time with their families since their diagnosis or have deliberately sought to work less and create more balance in their lives. For others, it might be a bucket list, or finding a spiritual element to life… there are a whole myriad of possibilities.
There is a season for everything and after the winter always comes the spring. Just hang in there… yes you may have to shed some things in your life because of this setback, some hopes, some dreams, some abilities, and some of that will be very hard and sad, but within that place of loss, the seeds for the future are being planted that contain the green shoots of goodness that you cannot in the darkest times even visualise.
I end with a poem I recently wrote about the experience. I hope it brings you hope and until then, please just hang in there.
Le gra
Pauline
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The healing of life 