“My experience as a patient is useful during every shift”

“My experience as a patient is useful during every shift”

Working in healthcare while living with a chronic disease affects both your professional role and your role as a patient. We met with Cornelia, a nurse and health educator who has spondyloarthritis and Crohn’s disease.

“I work as a pediatric nurse, in the department where I received my first chronic disease diagnosis at age 13,” explains Cornelia.

The diagnosis was Crohn’s disease. Just about a year later, she was struck by joint pain, but was not diagnosed with spondyloarthritis until age 20.

Speaking the language of healthcare

Cornelia feels that being medically trained and accustomed to healthcare settings gives her major advantages as a patient as well.

“It feels sad to say, but I’m usually treated differently because I’m trained. I rarely feel questioned, and the people I meet become really nice. It’s as if what I’m saying has more gravity because I’m using medical terminology,” says Cornelia.

She says that she does not believe it is intentional, but that having a common language facilitates care. Everything is smoother because she knows what information is needed in a given context and can package it appropriately.

“I also know the record system; I know what happens when, as a patient, I contact the clinic and what the process looks like at every step. That absolutely helps me.”

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“You’ve Googled too much”

But despite having both knowledge and insight, it can be difficult to navigate when you need help. Cornelia considers the stark division of care and lack of conditions that allow for a holistic approach to treating people with chronic diseases to be problematic.

“I sense some fear in the people who see me, and an attitude of ‘this isn’t our responsibility; it’s outside our area of expertise’ if I seek out care at a clinic for a seemingly common issue. But that’s still where we’re all referred first.”

She explains how she discovered redness on her leg, but was bounced around to different clinics without receiving help, even though she knew that because of her medications, she absolutely should not be going around with an untreated infection.

“I just kept hearing that I had Googled too much and that’s why I was worried. But in the middle of the night I had to go to the emergency room.”

Her concern about sepsis, which is a very serious condition, had become a reality.

We ask her if she sees a solution to how to better coordinate care to avoid incidents like this, and she knows exactly what she thinks.

“A specific helpline number for people with chronic diseases could be part of the solution. It would be a place to talk to experts and receive nuanced, well-founded responses. I’m considered a particularly complicated case today, which makes staff uncertain, leading me to constantly be advised to go to the emergency room.”

Personal experience adds dimension

Of course, we are also curious about how Cornelia uses her experience as a patient in her professional role. Her response comes without hesitation.

“Oh, I use my experiences as a reference every day, during every shift! I’m very grateful to be able to bring my own experience to the table.”

She explains that she does not talk directly about her own situation, but rather, that she uses her experience as support.

“I know what it’s like to be a teenager with a chronic disease. That can bring an added dimension when I’m talking to a family in that situation. And my personal experience of fighting with the Swedish Social Insurance Agency and having contact with various agencies means I can explain how something will happen in reality, and not just refer to what it says on the website.”

“It’s also important to me how I interact with patients, even the ones who aren’t my responsibility.

Receiving a smile and saying hello in the hallway can make a difference.”