Hey, how’d you like to be able to wear shorts anytime you want, even in the dead of winter? Sounds good, right? How about being able to eat as much salt as you want, diet be damned? Wow, where do I sign up?!
Well…not so fast—you may not be ready for the trade-off.
Just ask 26-year-old Delaware resident, Crystal Caldwell. Caldwell lives with Postural Orthostatic Tachycardia Syndrome (POTS), one disease in a group of conditions called dysautonomia.
Dysautonomia attacks the autonomic nervous system—as its name suggests, the autonomic nervous system controls automatic body functions, like heart rate, blood pressure, and digestion.
In Caldwell’s case, POTS plays havoc with her body’s temperature control, which is why she finds herself wearing short sleeves in the winter and opening her windows at night to cool down.
While the diagnosis helped explain some problems Caldwell had faced since she was a little girl, it did little to slow the onslaught of other symptoms such as lightheadedness, anxiety, and rapid heart rate. She’ll have to live with these symptoms for the rest of her life, but treatments like salt tablets (and extra helpings of salt at mealtimes) help by keeping her blood pressure higher and her fluid retention up.
And Caldwell has learned how to avoid triggers like lack of sleep, caffeine, or dehydration.
The diagnosis also did little to help her sense of isolation. As with other “invisible illnesses,” Caldwell doesn’t look sick, so it can be hard for others to understand how she’s feeling…or believe that there’s something wrong with her. Having a name for her condition did give Caldwell something, though: A goal.
Caldwell went to work, trying to raise awareness to help others struggling for a diagnosis—as well as medical professionals who know little about dysautonomia.
She successfully lobbied Governor Jack Markell to proclaim October Dysautonomia Awareness Month, and she networks with other patients and medical professionals who understand what she’s going through. She’s also been connecting with local patients to exchange information and encouragement. She has held fundraisers and gotten involved with Dysautonomia International and dysautonomia groups on Facebook as well.
Despite the challenges she’s faced, Caldwell is thankful for her loving and supportive family, especially her parents and boyfriend. And she’s thankful for all the little things in life that others might take for granted—unlike some patients, she doesn’t need a wheelchair or other assistive devices. That’s why she encourages patients to listen to their own bodies, and urges others not to judge those patients based on appearances alone.
