The Dysautonomia International Conference 2019 brought together clinicians, patients, caregivers, and advocacy groups to discuss Postural Orthostatic Tachycardia Syndrome (POTS) and discuss the most current research among medical doctors. Specialists from the University of Utah, Mayo Clinic, and Brown Medical School, among others, presented ways on how dysautonomia impacts specific organ systems.
For POTS patients, it is a collective experience to suffer from symptoms that a physical test cannot diagnose. Through panel discussions, the medical conference shed light on the practical approaches that physicians have used to diagnose dysautonomia.
1. “Will you listen first before checking my medical history?”
Most of the time, we dread going to the doctor for fear they will see something wrong with us. It’s not often that we meet physicians who can sit with us longer than ten minutes, listening carefully to our symptoms and patient history. Expert clinicians suggest that patients’ beliefs could change the diagnosis journey immensely, citing examples of treating options that didn’t require looking at previous medical records that may contain biased information.
2. “Why do you think my illness is not a rare disease?”
We don’t want to tell doctors they are wrong, but we want them to think that they could be mistaken. Asking questions that consider even the rarest of diseases can benefit patients because it encourages searching for information. It rings true, especially for POTS patients who have been suffering from the wrong diagnoses or lack thereof.
3. “What else can I do to learn more about my condition?”
When doctors feel that they have your support as a patient, they open up to you more and vice versa. This relationship can transform our healing journeys and help others along the way, too. As more studies emerge, patients are encouraged to seek each other, share experiences, and add to the growing research that fund treatments and medical conferences.
On your next medical check-up, open up to your doctor and try to ask these questions. If it helps in managing the pain, doctors will do what they can to help.