Tag: healthy privilege

Unseen, unheard: the commonly shared lived experience of patients

~ Carolyn Thomas ~ 17 Comments

by Carolyn Thomas  ♥ @HeartSisters

At first, I was surprised that so many women living with breast cancer were following my Heart Sisters blog. I’ve never had breast cancer and I rarely write about breast cancer (except here, for example, on the known link between breast cancer treatment and subsequent heart disease). Yet what I was soon to learn was that heart patients have lots in common with cancer patients, or with anybody else who has been blindsided by a serious medical crisis. Although the diagnosis may be different, we can face the same shock, fear, confusion, pain and exhaustion experienced by all who suddenly know what it’s like to become a patient.

Abigail Johnston is one of those breast cancer patients. We follow each other’s blogs. She was a 38-year old lawyer and mother of two boys when she was diagnosed with Stage IV Metatastatic Breast Cancer (MBC) in 2017. She writes about this on her compelling blog, No Half Measures from her home in Florida.  Every word of her recent post called “Unseen and Unheard“  hit home for me.        .       Continue reading “Unseen, unheard: the commonly shared lived experience of patients” →

My open letter to “Patients Included” conferences

~ Carolyn Thomas ~ 39 Comments

different red chair

by Carolyn Thomas  ♥  @HeartSisters

Dear medical conference organizers,

Thank you so much for inviting me to participate in your conference later this year. It is a real honour to be asked to help represent the patient voice at your prestigious event. I know that inviting patients alongside your impressive international roster of well-respected physicians is new to you. So congratulations on your interest in the  increasingly important “Patients Included” movement sweeping through medical conferences. By the way, here are the five qualifications your event requires in order to meet those Patients Included criteria.

But as I once wrote to patient blogger (and conference speaker) Carly Medosch:

“I can no longer afford to be ‘honoured’ by any more medical conference invitations.”

Allow me to explain:
 Continue reading “My open letter to “Patients Included” conferences” →

A letter to my pre-heart attack self

~ Carolyn Thomas ~ 14 Comments

DearCarolynSMALL

Duly inspired by CBC Wiretap’s “How To Age Gracefully” (a delightful farewell video letter to their radio fans, e.g. an 8-year old’s wise advice to a 7-year old), I’m sending this letter to my pre-2008 self.  Since my “widowmaker” heart attack that year, and subsequent ongoing cardiac issues, I’ve learned a thing or two about living with a chronic and progressive illness that I wish I’d known BHA (before heart attack).  I think I would have been a nicer and smarter and healthier person had I known these things long ago. So in no particular order, here’s my best advice to a long-ago me:
 Continue reading “A letter to my pre-heart attack self” →

When we judge the poor the way we judge the chronically ill

~ Carolyn Thomas ~ 15 Comments

by Carolyn Thomas  ♥  @HeartSisters

There’s an old joke about a woman who is successfully losing weight by following a very strict diet. But one day, her hubby returns home to find her sitting at the kitchen table finishing off a Hershey chocolate bar. He says to her: “Honey! You’ve been doing so great on your diet until now! How could you eat that chocolate bar?”

And her reply:

“You don’t know how many I wanted . . .”

That response sums up a profound message that goes beyond mere diet-cheating to how swiftly we rush to judgement based simply on what we see.  Mostly, we rush to judge other adults based on actions or behaviours that are none of our business (sometimes criticism is thinly veiled as “caring”:  I care about you so I have to mention the chocolate bar I see you eating. . . )  We judge others because they are not like us, because they make choices we wouldn’t, or because they make choices we might secretly want to make, too – but stop ourselves from doing.

Dr. Lisa Wade’s provocative essay on how we judge those living in poverty recently reminded me of how those living with a chronic illness diagnosis like heart disease can feel similarly judged.  Continue reading “When we judge the poor the way we judge the chronically ill” →

When we don’t look as sick as we feel

~ Carolyn Thomas ~ 44 Comments

by Carolyn Thomas  ♥ @HeartSisters

One morning, I overheard two of my co-workers chatting over coffee at the hospice palliative care unit where we’d worked together for several years. They were talking about one of our colleagues who had been off work on an extended sick leave. One said to the other:

“Oh, I saw ____ the other day. She was out riding her BICYCLE!” 

The way she said the word ‘bicycle’ stuck with me, tossed off with that pared down judgmental tone we use when what we really want to say is: “Hmph… Must be nice!”  The tone somehow implied that anybody who can hop on a bike and toodle around the neighbourhood on a sunny day couldn’t be THAT sick after all. . . . Continue reading “When we don’t look as sick as we feel” →