I recently got a message from a lady in the US. She had read a blogpost I had previously written on the impact of SCAD, heart failure, and open-heart surgery, (see ’10 years on…’) and having experienced all three of these herself, only a few months prior, wanted to know what my medical results were like now. She, like me, had just had a baby at the time that illness struck (my experience of that written here if it helps anyone), and was naturally anxious about the future and what level of heart muscle recovery she might hope to achieve. She felt I could offer her a reliable future scenario, as a flesh and bones example, of her situation, rather than just a hypothetical one. Thankfully I was able to tell her that my heart muscle had made some improvements over the years, which she translated as hope and possibility for her too.
It’s not the first time I have received a message like this. In fact, the first one was from a woman from the Midwest who messaged me to say she had never come across anyone her age (forties) with heart failure, until she saw a vlog I did with an Irish charity on living with heart failure, and couldn’t believe that there were other women out there like her, trying to raise kids, while also having a diagnosis of heart failure. She said knowing that had given her the belief that living with both was possible.
A number of years before the blogs and vlogs etc. I was trying to do lots of recovery work by myself. I didn’t have much of a choice… I was ‘rare’, and ‘young’ to be dealing with the health challenges I had, so there was a limit on what services and supports were out there for me.
But the by myself strategy left me feeling lonely and lost. It felt like I was trying to climb Mount Everest solo. The patient loneliness that had begun on the hospital ward, continued after coming home. Yes, I had family around me and that was wonderful, but as regards managing my health issues, I felt totally alone.
I set about trying to find people online in the first few months, but 10 years ago, typing in ‘SCAD’ to Google, just led to autopsy reports. It was so shocking that I gave up my search for many years.
When I finally connected with another SCAD patient from Ireland, through an online medical platform which I had finally plucked up the courage to message, it was pure magic. She knew a few other SCAD patients too, but us all connecting seemed so haphazard. I felt compelled to do ‘something’ to make a difference to the next patient in a hospital bed, to at least disconnect their rare diagnosis from a life of isolation and loneliness because of it, so in 2018, after a lot of pondering, I decided to set up a group, called SCAD Ireland for SCAD patients living on the island of Ireland.
My involvement in this group led to requests to publicly speak about my experience, first to the SCAD patients, then through invitations to present at medical conferences about my experience of SCAD, but too of being misdiagnosed and left with heart failure as a result.
But I didn’t just talk about misdiagnosis and medical procedures. I spoke of what happens to life after diagnosis, when we close our front doors; the challenges, the pitfalls, the dreams lost, the relationships that struggle, the added stresses and distresses that come from illness emotionally, psychologically, financially, the parental guilt, the loneliness and the grief and fear that remains in our systems, often for years to come.
But it wasn’t all a depressing tale. I spoke too of the process of self-discovery and learning, and the positive change that occurs when we allow and accept where we are at. I spoke too of the unexpected gifts that also arrive in life because of the misery we’ve been through, the new perspectives gained, the appreciation for life, and the gratitude that we made it. As I often describe it, my illness taught me that ‘there’s no crucifixion without a resurrection’ but it can take time, patience, willingness and hindsight to see that.
The truth is the impact of my story is less in the telling of it, and more about how it demonstrates how humans relate to the vulnerability and pain of other humans, which stirs something deep within them for the better…
Sometimes medical staff come to me after a talk, sometimes even emotional, and offer apology on behalf of their profession for what happened to me, or acknowledge almost confessional style their own inadequacies and failures to meet a patient’s needs in their past, but vow as a result of the story, to never let bias, or misconceptions about the age, or gender of a patient, misdirect them again…
Then there are the patients who admit to the isolation and loneliness of dealing with their health issue, or to feeling full of anxiety, and feel heartened to know that they are not ‘failing to cope’ with illness, but realising that their mind has to heal as much as their body.
Then there are employees in patient organisations who say they hadn’t realised some of the struggles the patients go through in the aftermath of diagnosis and want to introduce new supports to help these types of struggles… and other professionals who encourage me to ‘keep going’, to keep challenging the system, because they know its inadequate but need stories like mine to reflect the consequences of that, and to motivate change…
Sometimes regular folk, not even patients, but people with different problems and issues in life, message me after hearing, or reading some media interview or podcast somewhere, to say that hearing my story has made them feel that they can get through their own hardship…
And remember that’s just the ripple effect of one person’s story… can you imagine if we all had a platform to tell all our stories?
It is tempting to hide our stories, because of the inadequacies we fear they will reveal about us, or because we don’t fully trust our audience with the vulnerability required to tell them. Indeed not everyone might respond to our vulnerability with the compassion required, so yes, we have to choose an audience that wants to listen… usually those suffering, or trying to help the suffering are the ‘willing’.
But your pain, your suffering, your challenge, your story too has the power to stir something in your ‘willing’ audience, be it the neighbour experiencing loneliness like you have, or the mother experiencing feelings of inadequacy like you once did too. It doesn’t have to be in a conference setting to matter. Your story told in any setting matters because of how it will encourage and guide those in the same boat now as you once were, that this too shall pass. It’s the pay it forward in terms of comfort, hope and possibility. And everyone needs that at times.
If relating our painful experiences has the ability to bring hope, comfort and healing to others, one has to question if that might in fact be the purpose of that pain? Perhaps yes, or perhaps it’s part of a greater transformation, incorporating ourselves too as individuals in the narrative, to grow through, and because of, the pain experienced, as much as helping the next person on their painful journey to do the same.
Don’t underestimate the power of your story. It could be a vital stepping stone from despair to hope for someone else. And who knows, sharing it might even help you experience the joy of a resurrection after your own personal crucifixion too.
© Pauline O’Shea
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