Unseen Struggles: When the Pain of Chronic Illness Meets Disbelief

A friend’s desperation.

Photo by Ben Blennerhassett on Unsplash

It was early in the morning when I received a call from my best friend, who was crying and
distraught. She frantically rattled off her symptoms: “My stomach is on fire, I can’t sleep, nothing is relieving the discomfort, and I’m in excruciating pain.” Although she’d been feeling discomfort for the previous two weeks, at first she’d thought the intensity of her current symptoms might be from food poisoning. Given her not always healthy diet, which she and I had discussed in the past, I too at first thought she might have eaten something that set the symptoms off.

“It hurts so badly I don’t think I can take it anymore,” she told me over the phone. “I can’t stop going to the bathroom.”

She said that despite the severity of her pain, her family just thought she was being dramatic. I could sense her desperation as she sobbed over the phone. Even though she did not want to seek medical attention, I begged her to go to the nearest clinic or hospital and told her I’d meet her there.

Crohn’s disease: When nurses doubt a patient’s pain.

In the emergency department (ED) where […]

2023-09-07T11:14:39-04:00September 7th, 2023|Nursing, nursing perspective, pain management, patient experience, Patients|1 Comment
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The Legacy of the Asthma Nurse Who Really Listened to a Five-Year-Old

My mum tells me that when I was two years old, I would regularly go blue, particularly when I was walking my sister to school on a cold, windy day. Alongside this, I coughed incessantly. My parents took me to the doctor’s surgery multiple times, and their concerns were dismissed by the GPs, or a course of antibiotics given.

One day when I was particularly unwell, my mum was unable to get a doctor’s appointment but was able to see one of the practice nurses. The nurse identified intercostal recessions and immediately got a doctor to examine me. The doctor asked my mum how long I had been asthmatic; that was the point at which I finally received the diagnosis that linked me into a nurse-led clinic for long-term monitoring.

The nurse was Mr. Pierce*, a man who initially seemed to me scary, authoritative, and old. His voice boomed and filled his modest consulting room. He always pushed open the door to the patient waiting room with considerable energy and vigor, loudly announcing patient names, a habit which made me jump without fail.

Trusting the patient’s expertise.

Mr. Pierce was very much ahead of his time in terms of acknowledging patients’ expertise in their own health. He listened to my account of symptoms, asking my parents […]

2020-12-02T10:58:37-05:00December 2nd, 2020|Nursing|0 Comments
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Putting Down Her Burden: A Patient’s Final Choice

‘goodbye, inhaler!’

Chronic illness as a Sisyphean bargain.

Sisyphus was a legendary king of ancient Greece who was condemned by the gods to eternally roll a rock up a hill, only to have it roll down again each time as it neared the top.

Many people with chronic illness today may be able to relate. Chronic illness can mean years or even decades of worsening symptoms and ever more complex medication and treatment regimens, side effects of treatments, treatments for side effects, monetary pressures, activity limitations, a sense of separateness from the legions of the merely ‘walking worried’ around us, and the subtle pervasive tension and vigilance of never quite knowing what might come next.

The ironies of advanced medicine.

The assumption, of course, is that all the effort is worth it. And it is: many of us benefit from, or know people who benefit from, drugs that keep them alive when 50 or 100 years ago they would have died long ago, or keep them able to walk, or breathe without a struggle, or sleep without excruciating nerve pain or the itching of terrible skin sores, and so on. Life has always been about compromise; these are simply new refinements of a universal equation.

2020-01-23T10:03:01-05:00January 23rd, 2020|Nursing, nursing stories, patient experience|1 Comment
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‘No Illusion of Forever’: A Mother and Nurse Makes Every Day Count

As a nurse in my early twenties, I worked with kids with cystic fibrosis (CF). At that time, we were just beginning to see some teens and young adults in our CF clinic. I was close to them in age, and friendships naturally developed. Some never even reached their twentieth year. I had never seen people my age die, and although as a nurse I knew this was possible and even likely because of their illness, every death was shocking to me.

It’s hard, then, for me to imagine how it must feel to have siblings with a terminal disease. It seems to me that losing just one brother or sister early in life would be devastating. What if you watched six die?

A childhood punctuated with loss.

In this month’s Reflections column, “No Illusion of Forever,” author and nurse Elizabeth Bruno shares her memories of her time with the brothers she lost to agammaglobulinemia. The earliest death was a brother who died at ten years of age; the longest living was her oldest brother, who lived to the age of thirty.

Part nurse, part mother—always remarkable.

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2018-12-06T14:38:20-05:00December 6th, 2018|family caregiving, Nursing|0 Comments
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Confronting the New Normal: A Family Caregiver’s Perspective

By Kay Patterson, MA. The author is a retired licensed mental health counselor from Buffalo, NY. Before her career as a counselor, she was a newspaper reporter. Recent essays, profiles, and travel pieces have been published in the Buffalo News and other publications.

fork-in-the-road“All I wanted was a cortisone shot,” my wife moaned as we left the doctor’s office after an MRI investigating several falls she’d taken. Her dazed look reflected my feeling exactly. She was one hip surgery down, another one to go, and now . . . back surgery?

The neurosurgeon had been breezy but concerned as he showed us the results on his tiny iPhone screen.

“The lumbar MRI caught a small area of your thoracic. Good thing. You’ve got a stenosis and if we don’t decompress it right away, you could lose all function in your legs.”

What?

He said he needed another MRI for a closer look. We had just enough time to buzz home for a sandwich and some frantic research. Thoracic stenosis, Google told us, is a compression in the middle of the spine that cuts off messages from the brain to the lower extremities. It’s rare and potentially dangerous.

Potentially. Was the neurosurgeon rushing it? “He’s like Hawkeye on MASH,” Susan groused. “A hot shot.”

“Uh-huh,” I mumbled, struggling to remain in helper mode after two months of watching her mysterious wobble. My heart […]

2017-05-05T17:23:16-04:00September 26th, 2016|Patients|0 Comments
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Views expressed on the blog are solely those of the authors or persons quoted. They do not necessarily reflect AJN’s views or those of Wolters Kluwer Health/Lippincott Williams and Wilkins.
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