Healthy Living

It’s Important: What People With CF Want Their Doctors to Know

There may be instances when healthcare professionals may not acknowledge your condition appropriately. Here's what they need to know.

It’s Important: What People With CF Want Their Doctors to Know

Doctors and nurses are a group of professionals that are vital to patients’ health. Often times, such as when dealing with a chronic condition like cystic fibrosis (CF), some of these professionals can become like family due to how frequently you see them. And in a majority of cases, through mindful collaboration, a friendship between doctor and patient can blossom.

However, there are instances when you may come across healthcare professionals who do not acknowledge you and your condition appropriately. Having said that, here are some of that things that individuals with CF want their doctors to know or rather to bare in mind when providing them with treatment:

  • I have many sides – CF is a huge part of one’s life and the lives of those who love them. It also affects multiple areas outside of health, such as family, friendships, work, etc. Individuals with CF want their doctors to know that they are multi-faceted and that one role can be as important as the other.

“I think it’s important for medical professionals to remember that many of us have lives outside of CF. We are professionals, parents, students, adventurers, athletes, volunteers, aunties and uncles, siblings, etc. CF is not who we are, just a part of our lives” said Aimee Giselle.

  • I have unique needs – In clinical interactions with younger children, health-related decisions are made by health professionals in consultation with parents. What’s more, day to day disease management is generally assumed by the parents. Adolescent individuals with CF want their doctors to know that they have distinct needs in the management of their health and condition. They want their preferences, desires, knowledge base, capabilities and rights to be taken into consideration as they are constantly evolving and changing. Different approaches - including adept management of adherence, consent and confidentiality - may be required at all levels of the doctor-patient relationship.

“Treat/acknowledge the patient as an individual with respected feelings and emotions” said Tiffany

  • I am the expert on my own body – Despite research and publications on CF, only the individual who is living with the disease can know the dynamics and complexities that are associated with one’s own body. Individuals with CF want their doctors to know that their own perceptions and feedback are just as valuable and essential as any doctor’s medical expertise. One of the best approaches that any doctor can take is to recognize each individual with CF as just that – an individual, as well as to give them room to offer feedback, ask questions, and create a mindful collaboration among the two.

“Sometimes we don’t feel like what our numbers say” said Winnie Reed

  • I want you (the doctor) to be human – Individuals with CF recognize that their doctors are the medical experts and that they come to them for answers. However, sometimes the answer is complicated beyond what is expected. That being said, individuals with CF want their doctors to know that they have respect for the doctors who can admit when they do not know something. They admire the doctors who are lifelong learners and seek out second or third opinions or consult with specialists to resolve issues.

“Admit gaps in knowledge. Educate yourself” said Paulina Meader

  • I want you (the doctor) to set aside your assumptions – Perhaps a majority of individuals do not have medical degrees, but that does not make them any less intelligent or incompetent when it comes to understanding their condition. Individuals with CF want their doctors to know that they should not have to prove their worth in order to be treated with better attention and care.

“I was often talked to like a child. Once I explained to them that I was in med school (not anymore though), worked in a research lab, and have extensive medical knowledge, they treated me with more respect. We are more than our sickness” said Rebecca Zedillo

  • Everyone will be the patient, even you (the doctor) – Getting sick throughout the course of one’s life is inevitable, as lifelong health is not promised to anyone. Although individuals with CF are most often the patients, they want their doctors to know that the roles can be reversed at any time. They just want to be treated the way their doctors would expect to be treated. Simply demonstrating compassion and understanding their humanity can make a positive difference.

“Treat their patients as if they were your own kids” said Mason LeFleur

  • There is no one or right way to cope – Each and every individual with CF has his or her own way of coping with the disease. This is why individuals with CF want their doctors to know that their feelings should be considered and validated. They want them to know that support from one’s care team means a tremendous amount.

“Having a doctor help us while being sensitive about how anxious this disease can make us is important” said Lisa Agostoni

Working and learning together

A majority of individuals with CF have stated that living with CF is like having a full-time job. Undergoing airway clearance and taking a handful of pills are just some of the treatment requirements before breakfast – and all before leaving the house. Additionally, nutritional requirements for each individual with CF are unique, as there is no universal recommendation that applies to everyone. Requirements and recommendations depend on several factors, including age, gender, severity of lung disease, malabsorption, and food preference.

That being said, CF affects each individual differently and there is no one or right approach to managing or coping with the disease. Above all, individuals with CF want their doctors to know that they did not choose to be diagnosed with CF. However, becoming a doctor is a choice and with it, comes the responsibility to treat patients as individuals. All patients respond better to a doctor who is approachable and empathetic to their needs, thus emphasizing the importance of courtesy and compassion in healthcare. With this in mind, doctors can develop these skills early on to better meet the demands of practicing medicine and to master the fundamentals of quality patient care.