When I got diagnosed with Cystic Fibrosis (CF) it was a very confusing and challenging time in my life. I was equally parts hopeful and scared when the doctors first gave me the diagnosis. They hurriedly explained what CF was but in scientific terms that I did not understand. I was not told much else, except that many people who experience CF suffer from anxiety and depression and struggle with gambling addiction and substance abuse issues due to the infuriating effect of living with this ever-changing disease. This illness sometimes runs in the family and my cousin Stacey had CF. Stacey had actually died due to complications around her CF in 2005. Once the doctors realized Stacey was my cousin, their faces lit up with excitement and recognition, shifting the focus away from my new diagnosis. I had all these questions and fears, but before I could get a word in, they began recounting happy memories with Stacey and bombarding me with questions about our relationship. In a moment that I am not proud of, I shouted to the doctors: “Can we stop talking about Stacey now? Can we focus on me? Am I going to die soon like Stacey?”. I did ultimately get the answers to my questions but I always felt bad about what had happened. I just wanted to say, Stacey, I’m sorry.
Fortunately, my therapist helped me figure out some questions to ask the doctors when I saw them next. I learned that CF causes the body to produce an excess amount of mucus, which then infiltrates the lungs and makes it difficult for them to function properly. The body then fights to expel the excess mucus so that your lungs can take in enough air. The simplest way to describe it is that it is basically like having a really bad cold all the time. Additionally, I was informed that my life expectancy was 75+ and that while the illness had no cure, it could be managed through daily treatments, exercises, and medications.
I am fortunate because I do not require an oxygen supply or a lung transplant in the foreseeable future, unlike many others living with CF. I have been given medicines and treatments that keep the mucus production in my lungs more under control, thus making daily life a bit more manageable. Taking all of my medications can still feel overwhelming as they are time-consuming and somewhat mentally and physically demanding.
Initially, I had some difficulty adjusting to the new demands being placed on me. Getting used to this illness required me to reorient my life around the necessary treatments and learn to incorporate them into my daily routine. Although the new treatments were somewhat helpful, I had not been cured or received full relief from my symptoms. Something this diagnosis did not relieve me of was frequent visits to specialist doctors. My CF clinic doctors are helpful, but I still have to see additional specialists in response to the different symptoms in different areas of my body.
Likely following along with my story, you may have noticed a pattern by now, which is that some of the challenges in our system come down to communication issues at the interpersonal level. One such miscommunication is that sometimes doctors use technical language and speak very quickly. When a patient is receiving life-altering information this way, it can be overwhelming and confusing. Not having a complete understanding of what doctors are telling you can negatively impact your ability to manage your illness and undermine your agency over your own body. This is why a basic understanding of the medical terms being used regarding your specific issue can be very helpful.
It can be quite useful to write down and research terms your care provider uses to describe your diagnosis. Google can be your friend and your worst enemy. My CF doctors and I strongly discourage you from going on WebMD or any pseudo-medical site because they do not give out scientifically-based information and will end up scaring you unnecessarily. Some legitimate medical websites that are available to the public, free of charge, include government health websites and any foundation or organization dedicated to bringing awareness to a specific illness. You can also connect with other people facing similar health conditions through Facebook groups, Instagram pages, and research foundations. It is important to note that a treatment discussed online that works for someone else might not work with your body.
Additionally, one should practise and learn how to politely but assertively interrupt a physician, if need be. Do not hesitate to ask your care provider to speak slower, and/or to explain things in a simpler manner. There is a certain technique to learning how to assert yourself with a doctor while also being polite. A patient should practice this manner of speaking with friends and family ahead of any appointments they have scheduled. It is important to be your own advocate and voice any important concerns you may feel. It is not a coincidence that I have heard many parents of sick children commend me for asking questions and asserting myself with doctors. I have found that if you do not ask for help or clarification from your doctor that you may be more likely to receive the runaround and become lost in the system. Sometimes when a person is seeking a diagnosis for a less common illness, they can get lost in a cycle of never-ending tests and be sent to different specialists over and over again. I know this can sometimes occur because it has happened to me and it is part of why it took me nine years to get diagnosed. Patients will also want to be sure and ask what the follow-up steps are to gain insight into treatments or procedures you might need in the future. Being informed of the following steps will allow you to take charge of your treatment and the care you are receiving.
There can also be additional challenges on the day of the medical appointment. Here are some tips that might help this process feel less demanding for everyone involved. Be aware that regardless of the time of day that you have an appointment scheduled, you will have to wait anywhere from thirty minutes to two hours to see the specialist face-to-face. Should you work in the area near where your specialist is, I would advise you to take at least a half day off from work. Once you do get to see the specialist, there is a decent chance that they may be very busy and overworked. My main E.N.T. explained that often there are many patients that are scheduled for visits very close to each other and only a few specialists who are trying to manage an overwhelming caseload, thus sometimes resulting in your specialist needing to run between your room and another patient’s rooms to check in on other patients and ask them questions. It is clear that our healthcare system is underfunded and needs help. The Canadian Medical Association explains that:
“With health workers across Canada burned out and exhausted, surgical backlogs rampant, primary care access limited and emergency departments facing closures, the Canadian Medical Association (CMA), Canadian Federation of Nurses Unions (CFNU), Canadian Nurses Association (CNA) and HealthCareCAN are calling on Canada’s premiers to make health care their top priority…our health care crisis must be the priority, and an action plan is urgently required.”
While it is completely understandable that someone would be exhausted from being overworked, it is also important to remember how difficult of a time this can also be for a patient. I spoke with Pauline G., a patient with a chronic illness, who said:
“Keep in mind [that] we wait around all day and then we finally get to see this doctor. We are holding out hope that [the doctor will] help us[,] and it feels like we only have 10 minutes to prove [that] we’re worthy of your help[,] so a lot is at stake during this appointment. Some doctors do really care and do their best to help, but sometimes[,] a doctor is ignoring and intimidating [patients]. I think they forget or don’t understand that we are vulnerable and dependant – we’re basically at their mercy.”
It is understandable for doctors to be overwhelmed and tired given the lack of adequate staffing, but patients still deserve to be spoken to in a courteous and professional manner. If possible, it can be helpful for you to contribute ideas and questions when speaking with your specialist so that they may clarify any concerns or queries. It is important to find a doctor who is understanding and who actively listens to your descriptions of symptoms etc., as you alone know best how your body works. As in any profession, there are some people who are somewhat insensitive and not properly suited to your needs. If the doctor you are seeing does not feel like the right fit, then you have the right to seek out a better doctor. When you are dealing with a less common health condition, there are often too few or no other doctors nearby who can help with your specific problem. The lack of medical specialists is heightened in rural or isolated areas. The Canadian Health Workforce Network reports that the lack of funding for physicians is exasperated in rural areas:
“Most rural and remote communities face a shortage of health workers, especially doctors. Although rural Canadians constitute 22% of the population, fewer than 10% of physicians and 2% of specialists work in these areas. Adding to this problem, residents of rural and remote communities often have greater healthcare needs than urban residents, experiencing higher rates of chronic disease, traumatic accidents, and poorer mental health than their urban counterparts.”
Given the fact that patients in rural areas have less options for care providers, there can be undue pressure for them to make the relationship with their doctors work, even when the care provider is not the best fit for the patient.
It is not always advantageous to seek out a different specialist because it means that you then go back to the end of the line to wait. The wait time to see a specialist can vary from two to thirteen months and so you are sometimes left to spend that time in physical and psychological agony. The scarcity of specialists in many particular health fields may also sometimes result in a patient feeling the need to please their doctor and, in these situations, it can be difficult to practice your rights as a patient. If a person is in desperate need of help and there is only one doctor who is able to provide even a small amount of aid, then utilizing that care provider may be the best or only option available. In addition to being emotionally challenging, the long waiting periods can cause some illnesses to worsen in the body, potentially causing permanent damage, scarring, or loss of abilities.
The advice in this article is based on skills I have acquired over many years, and I was able to ascertain through much trial and error. In some ways, my life has improved since getting diagnosed with CF, but in other ways, this time has been more complicated with newer and unforeseen issues. The more recent or pronounced symptoms have been somewhat difficult to manage as they continuously change, thus making them hard to treat. I have had several symptoms arise since my diagnosis, all of which have been difficult and sometimes painful. Most importantly, I have had two bouts of pancreatitis, and it is the most recent iteration of pancreatitis that would end up changing and impacting my life and future significantly.
To Be Continued in Part 3
Edited by Bethlehem Samson