Everyone diagnosed with a life-threatening disease or chronic illness can have a different experience as a patient. Many factors might cause this, including how involved patients are or want to be in their medical care, the expertise of their physicians, and how rapidly or invasive their disease becomes. The one thing they might have in common, however, is that being a patient with a life-threatening disease or chronic illness can certainly test our patience.
It is hard to live with a life-threatening disease such as idiopathic pulmonary fibrosis (IPF), because breathing impacts everything else. This illness has no cure, with the exception of a life-saving lung transplant, and to be diagnosed as a young adult is very rare. Due to this, a number of medical professionals are curious to examine why I became sick with IPF in early 2016.
Many others need to be involved due to my age, whereas they might not have been otherwise involved. This includes fertility specialists, for example. Some of these conversations are really hard to have, and not all medical professionals are sensitive to this. It is hard to have one medical professional disclose that my option of having children might disappear post-transplant, but that I must wait to speak with a fertility specialist to confirm this. And the timeframe to get an appointment and seek out those answers will be over six months away.
While I have little to complain about regarding the Canadian healthcare system, sometimes the wait to discuss time-sensitive and emotionally overwhelming issues can really test my patience. This is just one example when I have felt impatient and needed to remind myself that many other patients are receiving care for diseases far more advanced than mine. However, at times it is hard to remember the importance of having patience as a patient.
Here are some other challenging times when I have had to exercise patience as a patient with a life-threatening illness:
- It is rare that my respirology appointments are ever on time. In fact, when I am driving to my appointment, I often don’t stress if I run into traffic or construction that will delay me briefly, because I anticipate my appointment will be delayed. As a classic “type A” person, I always strive to be on time — or even early — and this has taken some getting used to. However, unless my appointment is the first or second one in the morning, I know I won’t be going in on time and will have rushed to the hospital just to wait in the waiting room. This really tests my patience! I know the clinic is very busy, and there are higher-priority patients to be seen. That said, I struggle with waiting excessive amounts of time to see the doctor only to spend a very brief period with her. I know that if I needed more time she would give it to me to answer questions, etc., but most of the time it is a long wait for a very short appointment.
- Due to my IPF, as well as the medications I have tried to help slow my disease’s progression, I now have other medical issues that require attention. Since breathing is such a critical function of life, other organs can be affected by lung disease either from oxygen-deprivation or the medications used to treat the primary disease. Both have unfortunately happened to me. I have had some systemic issues arise, including cardiac concerns, and rheumatology and nephrology involvement. This means that my IPF has impacted other systems and organs in my body, all requiring a medical professional’s involvement and even more appointments. I am impatient enough as it is spending time in and out of the clinic, in hospital admissions, and at doctor’s visits. Adding to the number of specialty appointments really tests my patience. I know these are important, and I am grateful to the professionals who are dedicated to managing and improving my health. However, I am entitled to feel impatient when I am spending so much time dealing with my disease while my friends are out enjoying their last year of their 20s.
I want to state again that I have little to complain about when it comes to the Canadian healthcare system. But it is often difficult to be a patient with a life-threatening illness for many reasons. One of those reasons is how often our patience is tested with various appointments, waiting for results, or when it feels like our bodies betray us due to our illness.
Have you ever felt your patience was being tested as a patient?
Note: Pulmonary Fibrosis News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Pulmonary Fibrosis News, or its parent company, BioNews Services, and are intended to spark discussion about issues pertaining to pulmonary fibrosis.