I am lucky as a patient to get to attend conferences each year that teach science, research, and data with personal stories to go with them. One such event I attended this summer was Global Genes. This three-day event took place in San Diego, CA and was full of great sessions that were emotionally compelling and noteworthy at the same time. One I attended stuck with me. It has been made into a book and movie and has taught me a few more patient-provider lessons to follow for better access to care.
What if you felt like your brain was on fire? You were confused, hallucinating, having seizures, and full of anxiety. Suddenly having fever, headache and feeling tired for no reason. People may have seen patients like this and thought they were possessed by demons. There is a medical condition that, although rare, can strike with brain inflammation due to antibodies. There are actually multiple conditions, but the one I found out about is anti-NMDA receptor encephalitis. The speaker was Susannah Cahalan. She was an up-and-coming journalist at the New York Post. She had this condition and she had a hard time getting a proper or timely diagnosis.
As days turned into months, she progressively got worse, diving into insanity deeper and deeper each episode. She would fluctuate between chaos and catatonia. After researching her condition and symptoms, she and her parents found a provider who was a specialist in this condition. He was at the hospital the whole time but the condition is rare and no one recognized the disease. The specialist came in and after a series of misdiagnoses, hospital stays, and medications, the specialist was able to properly diagnose her and treat her—giving her a chance to rebuild her life.
Her personal journey is a brilliant way to learn about a rare disease but also teach us about how to have good communication with our providers. We need to remember the importance for standing up for ourselves, and when we are not able to do so, we should know that our family or caregiver will be there for us. Susannah’s parents were there for her. At first, they tried to help from home, but when it got too much, they had to take her to the hospital to get help. They didn’t know that this would lead to her actually getting the help that she needed. They did their best, but sometimes we just need the right doctor to help us out.
As a patient, if you feel like you are not being heard by your provider, I would suggest being open and honest with them. “Can you help me understand X?” would be a great opening comment to get the conversation started. This may spur the provider to look into what is going on with you a little more. “This is not normal for me. Can we set up some time to talk about it more?” could also be helpful. Also, carefully tracking your condition in a journal can help bring the symptoms from subjective to objective. There are great apps that can help one track what they are going through. With some, you can even send the information directly to the provider to review. Finally (and this is something I always do!), bring a caregiver or a family member with you. They can take notes, ask questions, and best of all, be your eyes and ears in case you are not feeling well (which is the reason you're at the provider in the first place).
The providers are also struggling with a lack of time. Being able to use words and examples that are easier to understand is important. The providers need to look for nonverbal cues. As in Susannah’s case, many of the providers tried to treat a symptom and her mental state first which caused them to overlook the neuro-inflammation. It was easier for them to believe that it was a mental disorder rather than a physical challenge that was causing mental outbursts. Many providers are also afraid of being sued so they avoid emotional and social issues. These often help tell a bigger picture that would offer better care for a patient. Providers would do better to remember that, most of the time, the patient is not trying to be confrontational. They are just trying to get the best care they can and when they feel not heard it can come off as undesirable. When you find yourself frustrated with the patient’s behaviors or not being able to help, you can also better your communication by asking the patient, “Can you help me understand X”?
Everyone needs to work together to find the best solutions. For more ideas on creating strong bonds with your patients, read "Top 10 Tips to Create the Best Patient Experience."