Taking responsibility for invisible illness

By Alyssa Marfisi, Queen’s University Nursing student


As a nursing student, we have many courses that attempt to teach us how to say the right thing when it comes to patient experiences. We have classes that teach us what we should say, as well as how to use non-verbal communication in our relationship with patients. What our courses cannot explain is the individuality of the diseases and the suffering that is experienced by the patients we encounter. For example, it is impossible to comprehend from a textbook how a person with diabetes has to alter their diet in order to stay alive. We are not able to understand from a video how someone with asthma yearns to join a game of pick-up soccer.

Nurses are defined by their empathetic character. We are instructed how to connect with patients regarding their conditions, prognoses, and fears. Although some people are born empathetic, empathy is often a learned emotion.

Admittedly, it is challenging to develop empathy, when you cannot directly understand the what the patient is going through. It’s a truism that it is much easier to identify with people with visible disabilities; if they cannot walk, we are able to imagine how our lives would change with that specific limitation. The experience of invisible illness (such as diabetes, asthma, arthritis, fibromyalgia, chronic fatigue syndrome, etc.) poses a different challenge in regards to empathy. As nurses, we must learn to look past the obvious disabilities and focus on limitations that are perhaps ‘invisible’, but life-altering just the same.

Being a member of Queen’s InvisAbilities has challenged me to move past the textbook definition of disability. It has pushed me to try to conceptualize the challenges people encounter dealing with illness that is not obviously present. Even without a visual picture representing a patient’s suffering, my responsibility as a nurse is to attempt to understand what the patient is going through.

Queen’s InvisAbilities has shown me the many different representations of illness, and how all types of suffering can alter daily activities. I’ve also learned that an awareness of invisible illness is just as necessary as assessing the oxygen requirement for a patient with a tracheostomy.

In order to carry awareness of invisible illnesses throughout my practice, I hope to be able to identify my patient’s experience of suffering. I want to be more aware of the different chronic conditions people live with on a daily basis, so that I can try to understand the struggles they go through. These struggles may include finding the right doctor, trying different medications and trial treatments, attempting to find lifestyle strategies to better cope etc. I hope that in the future, my patients can come to me for support through any of their struggles and find someone who is able to empathise with them and understand them.

Queen’s InvisAbilities has given me the opportunity to be a better and more informed nurse. I have learned so much through this group and hope I can give some of this knowledge back to the health care system so that we may all accept not only those with visible illnesses, but also invisible ones.