Ask the Health Leaders: Dismissive Doctors

Doctors are trusted for medical advice, treatment plans, recommendations, and more. But it's possible that a medical professional on a healthcare team, or specifically on a CF care team, may not be a good fit for you, and may even come across as dismissive.

We asked our health leaders: Has your healthcare team ever dismissed an issue you were having? If so, how did you handle that?

Response from Marieliz

Of course! I’ve had bad experiences in every aspect of my healthcare! From diagnosis to the way I felt I needed to be heard in certain situations. I have dealt with this in various ways, I have literally changed doctors and hospitals over what I felt was disrespect and disregard to my feelings. One thing all this has taught me is how to defend myself, speak up and ensure that all my concerns are addressed. I believe there’s a huge gap into what doctors treat as a patient and realize that we are people and that “we” all are a part of my care and my medical team.

We need to all realize that we are all in this together and through my experiences I am now more vocal about myself and my health because in the end it’s my body and I will accept treatment that my body can handle and respect that. I ensure that my CF team, and I work together to come up with treatment plans that work for us all because the side effects and the pain is only experienced by me, so my strength determines what I will and will not accept for myself. That’s something I had to become strong about sharing with my team, learning to say no was powerful.

Response from Cheriz

Yes, health issues will always be there. Whether lungs, digestion, liver, or arthritis, something always needs talked through at my CF appointments. We try to talk through all the options and then discuss my feelings about the options. We work from there to make a plan & goals. I learned how to communicate effectively and advocate for myself at a young age, with the help of my care team and parents. So I don’t think much of it when something comes up now. I’m thankful for a CF care team that listens, cares, and helps me achieve medical goals.

Response from Mikayla

My healthcare team has dismissed issues before. It was upsetting when I felt prepared to solve a problem I was experiencing only for them to shut it down. I had to learn better ways to advocate for myself which was complicated for a shy person like myself. I started to speak up more and have the confidence to explain to my doctor, “I cannot leave without a solution.”

Response from Janeil

Absolutely! It wasn’t until early adulthood that I realized one of the reasons I enjoyed writing so much was that it gave me a chance to organize and process my thoughts and feelings about CF. In fact, when I struggled to speak my thoughts out loud, I realized I could easily transcribe them to paper. This is why I started a personal blog and continue to write about my experience today here at Cystic-Fibrosis.com.

It’s so beneficial to my mental and emotional well-being. My advice: take the plunge! It feels so good to release some of those heavy thoughts and feeling you carry around daily. The people who love and care about you will thank you for letting them in.

Response from Moriah

I started seeing a new diabetes doctor, and I was discussing with her the idea of getting a continuous glucose monitor and insulin pump. In the middle of my sentence, she interrupted me to say that I was anemic (i.e. my iron was low). It became obvious to me that she hadn't heard a word I said. Furthermore, I suggested that it was likely caused by CF and she dismissed it saying, "no, I don't think it's related." (Yes, anemia is a common side effect of CF). After my appointment, I went straight to the front desk and asked to be scheduled with a different doctor.

Response from Kenny

My care team has always been a partner to me ever since I started working with them over a decade ago. So far, I haven’t had an occurrence where they dismissed an issue I brought up without first providing some information on it or why it might not be too big of a concern. That’s one thing I really appreciate about them, is that they can recognize when I have a concern and even if they don’t think it’s worth addressing, they give me some details on why and what I should look out for in the event something worsens.

The only time a serious issue went unaddressed is when I was having recurrent moderate hemoptysis, where we collectively ran out of ways to treat and prevent it. My care team hadn’t experienced a patient with the issue before and didn’t have knowledge on treatments for how to help. Even after trying to research and find alternative solutions, I was out of ideas as well, and just had to settle for letting it happen and trying to prevent it from causing more damage or infections.

Response from Jennifer

My team did not so much dismiss an issue as they did offer harsh judgement when I was pregnant. At that point I was already 5 months pregnant. While it was planned, even if it had not been – there was no going back, so I’ll never understand what the point in being rude to me was. Due to one doctors own lack of knowledge on the subject, he chose to lecture me and ask if this had been done “intentionally”. I had chosen to want a family and was made to feel bad for it. I had researched and taken every precaution. I did the extra treatments, ate the extra food, and took extra care of myself. Yes, I chose to have my babies and wanted them when I was younger so I had less complications.

I delivered two healthy boys but never forgot the judgement of that one doctor. The rest of the staff though was very supportive. This was sixteen years ago, so I do understand that pregnancy wasn’t as common with CFers, but I needed support from my CF team, not to be made to feel bad. I did call him out on his rudeness regarding my son and I, and he later apologized. He came to congratulate me when he was born as well.

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