When We Speak Up for Ourselves, We’re Also Advocating for Others

Doctors, nurses, hospitals, and clinics are simply part of life with a rare, chronic condition such as hemophilia. Many people in the bleeding disorders community learn early on that speaking up for themselves and their loved ones is crucial to their care.

Over the years of raising two sons with hemophilia, I have learned to advocate for my children. When I felt that my sons were not receiving the treatment they needed, speaking up was my only option. I also spoke up when I thought I was not being treated fairly.

People are often taught that the doctor is always right, individuals should never question or doubt their doctor’s decisions, and doctors deserve great respect. Many physicians deserve respect, because not only do they provide stellar care, but they also treat their patients in a reasonable manner. These respectable doctors listen to their patients and ask questions. When there is a good rapport between the doctor and patient, determining the care needed is much less stressful.

However, some doctors treat their patients with little to no respect. These physicians offer one course of treatment and refuse to listen to what the patient needs. After one such experience, I went through the necessary channels to report the wrong.

My family was attending an out-of-state hemophilia event. My youngest son, Caeleb, was 5 years old and had a port that was causing some problems. Our first night, I contacted the doctor on call for help. He was not familiar with Caeleb and told my husband we should never have taken the trip.

I was furious. Instead of getting help from the on-call doctor, I took Caeleb to the local emergency room. We waited for six hours, and once we saw a doctor, we felt reassured.

I knew I had to report how I had been treated over the phone, but in an official capacity.

I called the hospital system’s patient advocate. They were helpful and compassionate as they listened to my story. The advocate helped me navigate the official process of filing a complaint, and within 24 hours, I sent my letter. I didn’t know if the doctor would suffer any repercussions, but there was more at stake.

I knew that nothing could happen to help my situation. My hope in speaking up was to protect the next person who might be on the receiving end of this doctor’s words. If enough people had an issue with this doctor and they each spoke up, I wonder if something would have changed for the physician. I’d like to think that perhaps he would have been reprimanded or called out for his behavior, thus invoking a change.

Speaking up is not always easy. Sometimes it’s easier to say nothing. I have both spoken up and chosen to keep silent. However, every time I decide to stay silent, I am overwhelmed with guilt. The guilt I feel partly stems from not allowing myself to follow through. I also know that if I had said something, perhaps the next person would have had a better experience.

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Note: Hemophilia 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 another 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 Hemophilia News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to hemophilia.