Trusting your body: Guiding doctors to take CF symptoms seriously

This is part of a series about living with invisible illness for Cystic Fibrosis Awareness Month. Go here to read more.

People with cystic fibrosis (CF) know the disease affects many parts of the body, and the domino effect of symptoms, comorbidities, and medication side effects only multiply the disease’s toll. 

Yet many of us still find ourselves simplifying CF by calling it a lung disease. After all, lung complications are the most lethal consequence of the disease, and with all the coughing, they’re also the most obvious sign of our invisible (but not unheard) illness.

So it’s not much of a surprise that some doctors would fixate on the lungs when treating CF. As a result, there may come a time when you feel your other symptoms aren’t taken as seriously, even though they’re affecting your quality of life and could snowball into something more severe. 

I sympathize with doctors, but our other symptoms also demand urgency. The following is a guide on how to ensure your complaints are given the attention they deserve.

Patterns and preparation 

When preparing to present your concerns to doctors, whether you’re confident they’ll take you seriously or not, it’s important that you keep a log of your symptoms. Note when they began; whether you also started a medication around that time; if you’ve noticed anything triggering them; and how they’ve evolved in feeling, intensity, and frequency over time. 

Patterns will help your doctors realize you’re bringing up a recurring issue, and it will guide them in connecting the dots when diagnosing problems and adjusting treatments. After all, much of a doctor’s trade is detective work.

You might also research potential causes of your symptoms. There have been many times that I presented an idea about a medication interaction or a related condition and my doctors said they hadn’t heard or thought of that. You might say, “I read about a potential connection between this medication and this symptom. Could this be happening in my case?” 

Respect the doctor’s expertise, but also get them to respect your ability as a researcher, if that is a skill you possess. Doctors don’t have the time to memorize every case study and medication side effect. Make sure you end up on the same page as the doctor, even if you need to get a second opinion from another one. Come prepared with your own ideas to speed up the diagnosis process.

If you’re like me and you’re nervous that you’ll immediately back down when your complaint isn’t taken seriously, you might bring a support person for accountability. I’ll sometimes tell my loved ones, “Make sure I say …”

Navigating the talk

Enter the discussion about your symptoms with grace for your doctor’s divided focus, but also respectfully challenge any misguided assumptions about your health and its management. You know your body best in terms of how things feel, and your instincts often let you know when something is wrong internally. 

Don’t shy away from asking the important questions of “Why?” and “What could be causing this?” Seek clarity about why a symptom was dismissed. Be sure to emphasize the impact of the symptom on your quality of life, even if it is simply anxiety or dread caused by the mystery of it all.

If you still feel you aren’t taken seriously, explicitly request more investigation through testing or a second opinion from a specialist. You have the right to request testing, within reason. 

At the end of the conversation, summarize the symptoms you discussed and the next steps to ensure there’s no miscommunication. 

Strong partnership, strong health

Remember that you and your doctor are partners against CF, and healthy collaboration is necessary for achieving optimal quality of life. Be sure to maintain a good-natured relationship with them, but balance this with the wisdom of listening to your body and the urgency of treating symptoms and side effects before they spin out of control. 

If you experience increasing difficulty with your doctor to the point of feeling you can’t be honest with them or can’t expect your symptoms to be taken seriously, speak with your team’s social worker or another trusted staff member. 

These frustrations in teamwork do happen to many, but your health takes priority over any desire not to step on any toes.

Note: Cystic Fibrosis News Today 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 Cystic Fibrosis News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to cystic fibrosis.