I recently attended a medical conference for the Huntington’s disease (HD) community. Hundreds of people were gathered to collaborate, share knowledge, and learn how to better address the needs of their patients. During the first session, I found it challenging to listen to the presentation and the conversations taking place around me. The detached manner in which people were speaking was troubling to me, so I stepped out for a break. When I returned, it was no better. As I listened to the next presentation and participated in the group exercise, I kept thinking, Why is this bothering me? This is just how medical professionals speak. Intellectually, I could understand the use of the language, but emotionally, I felt gutted.

As a patient advocate, it is incredibly hard to hear people speaking about my community in such clinical terms. I am gene positive for HD, which means I will develop the disease. I am also a caregiver for my father, who is near the end stages of the disease. So it is hard not to take things personally because everything hits so close to home.

At lunch, I found a table in a small nook out of view. Slowly, other patient advocates joined me, and we spoke about the conference. Turns out I wasn’t the only one who felt triggered.

Several comments were particularly unsettling to us all. In one session, people were discussing how to convince patients to come into the clinic, whether for yearly appointments, observational studies, or drug trials. They concluded that they needed to develop relationships with family members so they trusted them and felt safe. That could involve reaching out by phone or taking more time in an appointment to simply listen. This was a great outcome of the discussion, but then a doctor put her hand up and exclaimed, “But who is going to pay for my time to do that!” While I understand she is running a business that needs to make money, this comment felt like a punch in the gut. Developing relationships is a basic human need. How does anyone expect us to trust them or take their advice if they don’t even have the time for that?

At another point, a doctor was presenting a case study about a woman who found out she was pregnant at eighteen during a routine observational study screening. She had been starting genetic counseling to find out if she carried the HD gene, and she ended up changing her mind about being tested given this life-altering news. The presenter said something like, “The last thing we want is for her to have four or five babies at risk.” This comment, while probably well-intentioned, showed a complete lack of insight into the complicated choices people make around genetic testing and family planning, and feeds into long-standing stigmas about HD; some people choose to have children who are at risk, and that’s perfectly fine. Medical professionals should provide options and support a patient’s decisions. Their personal bias should never get in the way.

The conference was so triggering that I was depressed for an entire week. I struggled with many questions. Does language matter? Do clinicians speak in this detached way to protect themselves from the emotional burden of their jobs? Should patients advocate for this to change?

The more I thought about the conference, the more I realized it was not only what people said but also what went unsaid. Overall, there was a lack of representation of the patient voice and little mention of patient-centric care. Every person walks into a doctor’s office with a past. Within the HD community, that past often includes trauma that impacts the way the person behaves and the decisions they make. If a clinician is not taking feelings and emotions into account, they are doing their patients a disservice.

We live with this disease every day of our lives. Every choice a person from an HD family makes involves extensive thought and emotion. When it comes to decisions around genetic testing, family planning, and end-of-life care, there is a high probability the person has been thinking about it for years. We have a right to make our own decisions—even if you think they are wrong.

In my seven years as a patient advocate, I have met a plethora of outstanding individuals who care for HD families and want the best for them. But the complaint I continually hear is there is a gap between families and the medical community. In many circumstances, the people trying to help us have never met us or see us only once a year at our annual appointments.

Patient advocates need to be at these conferences to share the real, lived experiences of HD families, but these meetings are not welcoming to them because of the language used and the detached manner of speaking. So what can be done?

Don’t judge. Prefacing your comments with I understand this is the patient’s choice, or I trust the patient to make the decision that is right for them, can go a long way to developing a trusting relationship.

Approach each patient and family member with a desire to learn from them. They are the experts on their disease and should be considered equal partners when it comes to care decisions. Every person experiences HD differently, and this must be considered.

Take a patient-centric approach to all conversations. The feelings and emotions of patients and their families must be included as part of these exercises and discussions, otherwise they feel dehumanizing.

The best way to help HD families is to partner with them. To do that, change your language and treat us with respect and dignity, even when we are not in the room. The way you speak about us behind closed doors impacts how you feel about us and the way you treat us as patients. By partnering with HD families and taking the time to listen, you are giving them a voice and making them feel empowered in their own health care. That is what will get patients in the door and keep them coming back for the wonderful care you know you are able to provide.

Erin Paterson is a writer and the author of Huntington’s Disease Heroes: Inspiring Stories of Resilience from the HD Community and All Good Things: A Memoir About Genetic Testing, Infertility and One Woman’s Relentless Search for Happiness.