A friend’s desperation.

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 she waited on a stretcher, she kept repeating that no one believed how much pain she was in. She lay there crying for a full hour before the nurse came with pain medicine. It was a big relief when the nurse gave my friend an intravenous dose as she calmly explained the plan of care, and I was struck by her sincere concern and commitment to making my friend feel comfortable. It is one thing for a friend to show empathy, but for a total stranger to show such compassion is something else entirely for the person on the receiving end. I felt honored in that moment to be a nurse and call this ED nurse my colleague.

The next day, my friend was admitted to a medical–surgical unit. By this point, her symptoms had temporarily resolved and she felt ready to go home. The physician and nurses recommended that before my friend left the hospital she should undergo an inpatient colonoscopy, given the severity of her symptoms. Meanwhile, I couldn’t help feeling uneasy at the way some of the nurses on the unit giggled and teased my friend about how she felt better after the pain medicine and was ready to go home; it seemed like they too did not believe my friend, just like her family.

At my persuasion, my friend at last agreed to the colonoscopy, which showed inflammation in her bowels. After three days spent by my friend in the hospital, the doctors confirmed that she had suffered a flare-up related to an inflammatory bowel disease (IBD).

Chronic illness and the burden of invisible pain.

Over the past five years, my closest friend has suffered from the type of IBD known as Crohn’s disease. I have watched the disease affect both her physical and mental health. My friend is often too self-conscious to go out to eat. She struggles with choosing foods to eat, aware that certain food groups may cause flare-ups. She struggles with her fluctuating weight and her chronic symptoms of diarrhea, abdominal pain, and fatigue. My friend’s disease has also caused other diseases, infections, and surgeries. She has been to several different hospitals and clinics in order to better manage her symptoms and gone through numerous diagnostic tests, screenings, procedures, and treatments.

Although my friend somehow always remains positive on this difficult path, her experiences give me a window into the care she receives in the hospital and elsewhere. The fact is, it can be exhausting to navigate the medical system with a chronic disease that isn’t visible at first glance to others. As nurses, we sometimes find ourselves unsure about the severity of someone’s pain. Their self-report is subjective, and we may find it difficult to understand that they can be in pain when they seem to be lying comfortably in bed. My friend has truly opened my eyes to the reality that every patient’s experience is unique.

Reflecting on compassionate nursing care.

As my friend continues to go in and out of hospitals, she always speaks about the different types of nursing care. Although she expresses concerns that many nurses are not familiar with the intense pain and severity of her symptoms, she also boasts about the nurses that go above and beyond to make sure she is comfortable. My friend’s disease and her experiences have allowed me to reflect on my own nursing practice. It is important to understand chronic diseases like Crohn’s disease and appropriate nursing interventions related to the diseases in order to provide compassionate and high quality nursing care.

Every patient has their own individual circumstances and experiences. Nurses play a crucial role in providing care and support to patients with chronic diseases. As nurses, we must show compassion and empathy when helping patients manage their chronic diseases. We must be able to communicate appropriately with different patients to address fears and concerns related to their condition, treatment, and lifestyle adjustments. Although I have a personal connection with someone who deals with this chronic disease and can empathize from her perspective, I must still work to consciously create nursing interventions that address each patient’s concerns and meet their individual needs.

Lilly Gareau, BSN, RN-BC