We’ve partnered with Inspire, a company that builds and manages online support communities for patients and caregivers, to launch a patient-focused series here on Scope. Once a month, patients affected by serious and often rare diseases share their unique stories; this month’s column comes from heart patient Carolyn Thomas.
My doctor once compared my uneasy adjustment to life as a heart patient with being like a stressful move to a foreign country.
I used to be pretty comfortable living in my old country, pre-heart attack. I had a wonderful family and close friends, a public relations career I loved, a nice home – and a busy, happy, healthy, regular life.
Then on May 6, 2008, I was hospitalized with what doctors call a “widowmaker” heart attack.
And that was the day I moved far, far away to a different country.
Many who are freshly diagnosed with a chronic and progressive illness feel like this. The late Jessie Gruman, PhD, who spent decades as a patient, described in a Be a Prepared Patient Forum column that sense of being drop-kicked into a foreign country: “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”
Deported to the foreign country called Heart Disease, I too found that nothing around me felt familiar or normal anymore once I was home from hospital.
I felt exhausted and anxious at the same time, convinced by ongoing chest pain, shortness of breath and crushing fatigue that a second heart attack was imminent. I felt a cold, low-grade terror on a daily basis.
Instead of feeling happy and grateful because I had survived what many do not, I frightened myself by weeping openly over nothing in particular. I slept in my clothes. I didn’t care how I looked or how I smelled. I had no interest in reading, walking, talking, showering or even getting out of bed. Everything seemed like just way too much trouble.
Where once I had been competent, I now felt unsure.
Where once I had made decisions with sure-footed speed, I now seemed incapable of deciding anything.
And my worried family and friends couldn't even begin to comprehend what was going on for me – because I could scarcely understand it myself. Sensing their distress, I tried to paste on my bravest smiley face around them so we could all pretend that everything was “normal” again. But making even minimal conversation felt so exhausting that it eventually seemed so much easier to just avoid others entirely.
I also felt deeply ashamed that I just couldn't seem to pull myself together as I struggled with what was ultimately identified as depression. Studies suggest depression strikes up to one-third of all heart attack survivors, yet remains largely unrecognized and ignored by cardiologists. At the 2015 American College of Cardiology conference, researchers warned: “Clinicians should assess all patients for depression like any other cardiovascular risk factor such as high blood pressure and high cholesterol levels.”
The distress of adjusting to such a debilitating change to one’s life is hard to describe to people who have never experienced it – those living with what psychologist Ann Becker-Schutte, PhD, terms “healthy privilege.”
I was referred to our regional pain clinic to address intractable symptoms, had to go back into hospital for another cardiac procedure, was newly diagnosed with inoperable coronary microvascular disease, and then finally, gratefully (after I learned that asking for help is not a sign of weakness), I found a skilled psychotherapist to work with.
Susannah Fox once wrote that many people who are “dropped into this kingdom of the sick” band together and form posses like “pioneers sharing maps with newcomers.”
Eventually, that’s what I did, too. I applied and was accepted for the annual WomenHeart Science & Leadership Symposium for women with heart disease at Mayo Clinic – the first Canadian ever invited to attend this unique community-educator training. I launched a blog and, as my health allows, have spoken to thousands of women about heart disease – our #1 killer.
My public relations friends tease me — this is what happens when a PR person has a heart attack. We just keep on doing what we know how to do best: writing and speaking and looking stuff up.
In this new country, I still have the same wonderful family, close friends, a nice home – but that busy career – and so much more - are gone. Rarely a day goes by without wishing I could go back to my old life. The reality, however, is that some of us living with chronic illness have been forced to permanently surrender our passports and will never return.
Welcome to the new country.
Carolyn Thomas is a heart patient, blogger and speaker about women’s heart health issues. Her writing has been widely published, including in the British Medical Journal. In 2012, she was awarded an ePatient Scholarship to attend Stanford’s Medicine X conference. This is an excerpt from an original post on Carolyn’s blog, Heart Sisters.
Photo by Hernán Piñera