Tag Archives: chronic illness

The loss of ‘self’ in chronic illness is what really hurts

2 Aug

by Carolyn Thomas    @HeartSisters

People living with chronic illness already know that the triple whammy of ongoing physical symptoms, psychological distress and the discomfort of medical procedures can cause us to suffer. But when California sociologist Dr. Kathy Charmaz studied chronic illness, she identified an element of suffering that is often dismissed by health care providers.(1)

As she explained in research published in the journal Sociology of Health & Illness, a narrow medicalized view of suffering that’s defined as physical symptoms only ignores or minimizes the broader significance of suffering in a way that may resonate with you if you too live with a chronic illness like heart disease: Continue reading

Who will take care of you at home if you’re seriously ill?

6 Jul

by Carolyn Thomas     @HeartSisters

It turns out that the hilarious British spoof on the horrors of the Man-Cold might be more true than we ever imagined. The joke reality here is that when a husband gets sick, his wife is naturally expected to become his doting caregiver, but when a wife gets sick, she may feel distinctly on her own.

A study presented last month at the annual meeting of the Population Association of America actually reported that the risk of divorce among married couples rises when the wife – but not the husband — becomes a heart patient.

Study author Dr. Amelia Karraker, a researcher at the University of Michigan Institute for Social Research, examined how the onset of four serious illnesses – cancer, heart disease, lung disease and stroke – affected the marriages of couples over a 20-year period. Dr. Karraker explained:

“We found that women are doubly vulnerable to marital dissolution in the face of heart disease.

“They are more likely to be widowed, and if they are the ones who become ill, they are more likely to get divorced.”

Why is this?    Continue reading

“We are all patients.” No, you’re not.

17 Dec

by Carolyn Thomas  @HeartSisters

patientI read recently about a conference on breast reconstructive surgery following mastectomy, to which not one single Real Live Patient who had actually undergone breast reconstructive surgery following mastectomy was invited to participate. This is, sadly, yet another example of “Patients Excluded” health care conferences – in stark contrast to the growing number of notable conferences that have garnered the “Patients Included” designation.*

The result of attending a “Patients Excluded” conference is just as you might imagine: hundreds of people working in healthcare getting together to talk at each other about caring for people who aren’t even at the table. Or, as one physician arguing for  “Patients Excluded” conferences protested online:

“I already hear patients’ stories all day long in our practice. Why should I have to listen to more stories at my medical conferences?”

Continue reading

The cure myth

2 Jul

by Carolyn Thomas  @HeartSisters

So a bunch of us, all heart disease survivors, were enjoying breakfast together one morning in Rochester, Minnesota. One of the women at our table looked up from her coffee and announced that, yes, even though she had survived a heart attack and subsequent open heart surgery, she didn’t really have heart disease anymore “you know, like the rest of you do.”

I looked at her and replied, in my most charitable tone:

“Honey, nobody gets invited to attend the WomenHeart Science & Leadership Symposium for Women With Heart Disease.here at Mayo Clinic unless they actually have, you know, heart disease.”  Continue reading

Finding the funny when the diagnosis isn’t

11 Aug
Note from Carolyn: “I’m taking the weekend off as we celebrate with family and friends the wedding of my favourite daughter, Larissa to her longtime beau Randy.  So meanwhile, I’ve obtained permission to republish this guest post by Casey Quinlan for you. Enjoy!”

It’s not easy hearing your name and [insert dread diagnosis here]. I know this only too well after having to find the funny in my own journey through cancer. Cancer is, however, most often a diagnosis that you fight to a defined end. What’s it like to find the funny in a chronic condition?

I have a number of friends who are battling MS, one of whom, Amy Gurowitz, shared a link on Facebook the other day to Jim Sweeney’s online empire of improv humor and chronic disease. Jim’s MS journey started with vision problems in 1985, he was officially diagnosed in 1990, and has been dealing with the disease – finding the funny most of the time – ever since. Continue reading

Top 10 tips from the author of ‘How To Be Sick’

8 Oct

by Carolyn Thomas @HeartSisters

Ten years ago this summer, law professor Toni Bernhard and her husband flew from their home in California to Paris, planning to immerse themselves in Parisian culture for three weeks. But on the second day there, Toni became very sick with what appeared to be an acute viral infection. She spent most of those three weeks in a Parisian bed. And ten years later, Toni is still sick.

Despite being mostly bed-ridden, she wrote a book she called How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers and she also blogs at HowToBeSick.com.

To mark her 10th anniversary milestone, the medical website KevinMD.com ran Toni’s list of 10 lessons she has learned about being sick. Here is a sampling of those tips, remarkably useful for those of us living with heart disease, too: Continue reading