Dysautonomia: Not All Disabilities Are Visible

"I may "look healthy," but I definitely don't feel healthy."

— Jessica

In honor of Dysautonomia Awareness Month, one of our amazing Spoonie Threads Ambassadors, Jessica Miles, wrote the following to share her story and experience living with Dysautonomia. Learn more about her by following her Instagram at @jessica_k_miles.

It's hard to describe the feeling to someone who has no idea what struggles one faces daily with Dysautonomia—feeling pain, feeling unwell, feeling awful on the inside while looking perfectly fine on the outside. Putting on a brave face for all to see has become a habit for most of us. Symptoms are usually invisible to the untrained eye, though they are life-altering for the person being affected. Imagine going through your daily life where almost everything you touch or touches you causes you discomfort somehow. Imagine never knowing each morning whether or not you'll be able to get out of bed. One day it might be vertigo and stomach pain, another it could be crippling fatigue, muscle and joint pain, or fainting from erratic heart rate and blood pressure...or it could be all of these at once. We can't just take a deep breath, relax, change our mindset and all of it goes away. There's no "magic pill" that will make this disappear.

October is Awareness Month for many different causes...one of which is Dysautonomia. I was diagnosed with Dysautonomia after my first bowel surgery in 2017, though knowing what I know now, I've experienced symptoms for years. In my effort to raise awareness, here is the definition of Dysautonomia...

What is Dysautonomia?

Dysautonomia is an umbrella term used to describe several different medical conditions that cause a malfunction of the Autonomic Nervous System. The Autonomic Nervous System controls the "automatic" functions of the body that we do not consciously think about, such as heart rate, blood pressure, digestion, dilation, and constriction of the eye's pupils, kidney function, and temperature control. People living with various forms of Dysautonomia have trouble regulating these systems, resulting in lightheadedness, fainting, unstable blood pressure, abnormal heart rates, malnutrition, and in severe cases, death.

Dysautonomia has affected my heart rate, blood pressure, digestion and nutritional status, colon and bladder function, and temperature control, which causes frequent fevers. It has left me with a port in my chest, a permanent ostomy, and a reliance on catheters to empty my bladder. It is a comorbidity of another disorder I have, which is quite often the case. This is my life. This is who I am. I'm finally choosing to accept that rather than constantly trying to change who I am. I may "look healthy," but I definitely don't feel healthy. With constant symptoms being thrown in my face, it's really hard to see the purpose in this. I wish I knew how all my fears and all my questions will play out in a world I can't control. But I've learned to live each day in the moment, and I hope to help others in the process.

@Jessica_K_Miles

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