It’s likely you did; it’s overshadowed by the barrage of pink ribbons for Breast Cancer Awareness Month. October is also Dysautonomia Awareness Month. Dysautonomia affects an estimated 70 million people, at least one of whom is a regular reader in my audience. I learned about dysautonomia from Heather Thompson, who, like many (but not all) sufferers, acquired the disorder after a head injury.
Let’s look at the word—dysautonomia. At the root we have “autonomy,” which means self-regulation. The prefix “dys” indicates a dysfunction of self-regulation. That’s what dysautonomia is, a dysfunction of the autonomic nervous system, which regulates your body temperature, heart rate, blood pressure, breathing, release of adrenalin, pupil response, and (this explains so much) sexual arousal. There are more functions regulated by the autonomic nervous system; this gives you a general idea that it’s responsible for homeostasis, or keeping conditions in the body steady in response to external changes. If you’re cold, the autonomic nervous system should make you shiver to help produce heat. If you’re hot, you’re supposed to sweat. If you have dysautonomia, you may not do these things at all, or in the right amount.
This article and photo series taught me a lot about dysautonomia and the people who have it. https://themighty.com/2016/10/photo-series-that-explains-dysautonomia-awareness-month/ Dysautonomia is an invisible disability that affects people to varying and inconsistent degrees. This is the problem so many of us with hidden disabilities face—inconsistency in our condition from day to day. It makes it hard to plan, hard to participate in things, and hard to explain when we have to miss work or beg out of obligations.
Dysautonomia is confusing because it’s not a disease so much as a class of related disorders, somewhat like autism. Two people with autism may have completely different disorders from the spectrum and manifest very differently—same with dysautonomia. Dysautonomic disorders include:
- POTS (Postural Orthostatic Tachycardia Syndrome)
- Neurocardiogenic Syncope (NCS)
- Vasovagal Syncope (syncope means fainting spells)
- Neurally Mediated Hypotension (NMH)
- Orthostatic Hypotension (sharp drop in blood pressure when standing up)
- Cyclic Vomiting Syndrome (CVS), often accompanied by severe migraine
These are just some of many diagnoses associated with dysautonomia. It takes a person with these issues an average of 6 years to be diagnosed. The hardest thing people with these disorders deal with is skepticism from their doctors, loved ones, and employers, because they can be fine one day and incapacitated the next. Their symptoms don’t fit into a neat “box,” so they’re often dismissed as not real.
If you look on the internet, you’ll find articles emphatically stating that dysautonomia is not an autoimmune disease, along with articles that say equally strongly that it is. Both may be true; some forms may be due to an underlying autoimmune condition, while many people had their first symptoms after a severe head or spinal injury.
There is no cure for dysautonomia, partly because there is no common underlying cause. Treatments are usually prescribed to address symptoms. My friend Heather Thompson has undergone IVIG treatment (intravenous immunoglobulin), which is used in an attempt to address a likely cause. I don’t even pretend to know how it works, but it’s given to people with autoimmune disease in the hope of modifying their immune systems to stop attacking their own cells. This is a rigorous treatment comparable to chemotherapy—patients go to an infusion center and sometimes have ports implanted. Reactions are common and excruciatingly painful. The treatment helped my friend, but she suffered a lot in the process.
This category of disorders is bewildering and hard to deal with, by doctors and sufferers alike. Chrysty Darby Hendrick said, “It can be a dark and isolating illness/disability.” Our loved ones with these disorders need our support and understanding. Just like anyone else. Has dysautonomia touched your life?
Emily Brown, The Mighty, https://themighty.com/2016/10/photo-series-that-explains-dysautonomia-awareness-month/, October 4, 2016
Dysautonomia International, https://dysautonomiainternational.org/page.php?ID=244, queried Nov. 4, 2019
Chrysty Darby Hendrick, public Facebook post dated October 3, 2019
Medscape, Intravenous Immunoglobulin, https://emedicine.medscape.com/article/210367-overview Queried Nov. 5, 2019