Dysautonomia: The Invisible Illness
Do you have a friend who nearly passes out almost every time he stands up? If so, your friend probably has a form of dysautonomia, a disorder of the nervous system. Here’s everything you wanted to know about this rare condition.
This article is divided into two parts: An Q&A-style introduction to dysautonomia, and a guide on how to help a friend with the disorder.
What is dysautonomia?
In the human body, the autonomous nervous system is responsible for many “automatic” functions — think circulating blood, breathing, and sweating — but in a few people, it regularly malfunctions. “Dysautonomia”, or autonomic dysfunction, is an umbrella term for a group of disorders. Its most common form is Postural Orthostatic Tachycardia Syndrome (POTS).
What are the symptoms of dysautonomia?
General symptoms can include:
Constant fatigue (despite enough sleep), dizziness and fainting, irregular heartbeat, breathing issues or involuntary breath-holding, excessive sweating, incontinence, circulatory problems, low blood pressure, sleep apnea, exercise intolerance, and body temperature issues.
What causes it?
While it varies by specific subset, the cause typically remains unknown. We do know it is closely associated with certain medical conditions, such as Lyme disease, diabetes, some autoimmune disorders, and some genetic disorders. Sometimes it appears shortly after a physical trauma, like a car accident or surgery.
Who does it affect?
About .05–1% of people, usually between the ages of 15–50. It affects more females than males.
Some cases are highly genetic, affecting entire families.
Is it contagious?
No.
Is there a cure/treatment?
Because dysautonomia is poorly understood by medical researchers, there is currently no cure. Treatment options are few, and frequently ineffective. Some patients report luck with medications like steroids or sodium tablets, as they increase water retention and alleviate discomfort caused by low blood pressure. Others find relief with physical aids, such as wheelchairs or kneeling chairs. Nearly all report making moderate to substantial lifestyle changes. These often include reducing strenuous activities, flexing time at work, or doing shopping online instead of in-person.
Dysautonomia is not always permanent. In the case of POTS, teens in particular are more likely to experience improvement of symptoms with age.
My friend has dysautonomia. What should I know? (DO’s and DONT’s)
- DO know the basics.
Here it is in a nutshell: Dysautonomia is a chronic medical condition and an invisible disability. It essentially means your friend has a dysfunctional nervous system that doesn’t respond appropriately, causing symptoms like dizziness or poor circulation. These symptoms can range from slightly annoying to completely debilitating.
2. DO be open to making accommodations.
Dysautonomia is a disability that may legally require accommodations. If or when the patient’s symptoms are severe enough, they may need adjustments in the workplace to optimize their productivity and protect their health. For example, a patient experiencing an episode of postural dizziness could request a day to telecommute, in order to work from a lying-down position.
3. DON’T assume the person is inept or incapable.
Dysautonomia varies person to person, and limitations can change day to day. A patient who gets lightheaded when standing for long periods may find heavy lifting to be easy. A patient whose vertigo leaves her in bed one day could be back on the treadmill by the weekend. If you think a work assignment could be dangerous or too challenging for your affected coworker, it’s OK to ask how they’re feeling.
4. DO try to be flexible about that weekend shopping trip.
Dysautonomia can be a frustrating disease because symptoms often “flare up” with little warning. As a result, patients find themselves frequently postponing events that require energy — sometimes even standing up for a shower can leave them out of breath! Try to be flexible in other ways. Instead of standing at a concert, catch a (seated) movie. And remember — it’s medical, not personal.
5. DON’T dismiss the person’s condition.
“But you look perfectly healthy.”
“Oh, just wait til you’re my age.”
“Everyone gets tired sometimes.”
Many patients with “invisible” illnesses hear these comments frequently, and struggle to be taken seriously or even believed at all — including by many doctors.
To illustrate, consider this: According to a recent survey, POTS patients see on average 7 doctors before they receive a diagnosis, an average time of over 4 years. (This is despite the fact that the simple diagnostic test for POTS takes requires just 30 seconds and a clock/stopwatch!)
This ignorance happens for a variety of reasons. Because few of their symptoms are usually visible — i.e., vertigo, fatigue, or nausea — dysautonomia patients are treated less critically and with more skepticism compared to those with a more visible affliction, such as a cut or a fever. Patients are often dismissed as “just stressed”, “hypochondriacs”, or, in the case of female patients, “PMS-ing”.
Similarly, patients often experience a regular need to justify or corroborate their condition in order to be properly accommodated or believed by everyone from strangers to loved ones. Doubtful and dismissive language, even when intended to motivate the patient, can often carry implications that suggest the person’s illness is invalid, make-believe, or exaggeration.
6. DON’T offer health tips.
Similarly, while your suggestion to “just drink more water” might help the average person resolve their tension headache, it’s not so helpful to a person with a chronic illness (who has likely tried everything under the sun for relief). It also can send the message that you doubt the person’s illness, or think that they don’t know how to take care of themselves.
7. DO ask questions.
It’s OK to be curious, and OK to ask if your friend could use some help with a task you know is a challenge for them. People with invisible illnesses often feel just that — invisible — and are usually happy to educate the people around them!
Dysautonomia can be isolating, frustrating, and overwhelming — but by being supportive, a person can make a big difference in a patient’s life.
