Tag: chronic illness

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

~ Carolyn Thomas ~ 36 Comments

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

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

~ Carolyn Thomas ~ 12 Comments

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 at the annual meeting of the Population Association of America reported that the risk of divorce among married couples is more likely to rise 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 “Who will take care of you at home if you’re seriously ill?” →

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

~ Carolyn Thomas ~ 70 Comments

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:

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

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

The cure myth

~ Carolyn Thomas ~ 24 Comments

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 “The cure myth” →