To many healthy, able-bodied people, October signifies cooler weather, pumpkin spice lattes, harvest time, and approaching holidays. To me and an estimated 70 million people worldwide, October is Dysautonomia Awareness Month.
Dysautonomia is exactly what it sounds like: dysfunction in the autonomic nervous system. The ANS is responsible for multiple important functions such as temperature regulation, digestion, bladder control, blood pressure, heart rate and fight-or-flight response. Primary dysautonomia can be inherited or due to a degenerative disease, while secondary dysautonomia may result from another condition or injury.
There are around fifteen types of dysautonomia, each with a random allocation of symptoms.
Common symptoms include:
- weakness, tremors, inability to stay upright
- low blood pressure, dizziness, vertigo, and fainting
- trouble breathing, heart palpitations and chest pain
- nausea, bloating and digestive issues
- fatigue and exercise intolerance
- sweats and chills
- migraines, brain fog, concentration and memory problems
This can make diagnosis an arduous process, as doctors have to rule out other diseases one by one. I suffer a dysautonomic condition known as POTS (postural orthostatic tachycardia syndrome) and almost forty percent of POTS patients endure five years of testing or more before they get a verdict.
Diagnosis but no Cure
People with dysautonomia face prejudices in and out of the medical offices. Some doctors dismiss our symptoms as paranoid or psychosomatic. Parents, friends, coworkers and teachers may accuse us of being lazy, attention-hungry or overdramatic. Even those who mean well, telling us to “get better soon,” fail to understand that there are no cures for dysautonomia, only lifestyle changes that may or may not help. Medicines that stabilize one symptom might exacerbate three more.
Anxiety and Depression
Anxiety and depression are common in dysautonomia patients. Losing so much of our physical function can make us feel like our lives are coming down around us. It’s very easy for us to catastrophize and blame ourselves for what is out of our control. This is why it’s so important that the people around us educate themselves about our condition and find the best ways to provide practical encouragement.
Supporting someone with dysautonomia can be messy, stressful and uncomfortable. My caretaker has hand-fed me, showered and dressed me, and picked me up from the floor on a regular basis. This is our “normal.” If someone you care about has dysautonomia, please know that compassion means so much to us. Even if you can’t understand what we’re enduring, asking “How can I help?” might make all the difference.
Turquoise ribbons are used to symbolize dysautonomia awareness. Wear one during the month of October if you want to show your support! If you want to learn more about dysautonomia, feel free to visit dysautonomiainternational.org.