If I had a dollar for every time I’ve explained my medical conditions, well by golly I’d be a rich woman, baby.
I’d probably have even more to put in savings if I had a dollar for every time I modified that Beatles song reference, too... I digress.
When I was about 14 years old, I began to have symptoms of what I’d find out years later was a lifelong medical condition. Meanwhile, my peers were taking part in multiple extracurriculars, studying and partying all at the same time.
Aside from several other draining and nagging symptoms, I was so tired all the time. I could barely make it through the school day and once I was home, I’d have to nap for hours to be able to eat supper with my family then start what felt like climbing the Mount Everest of homework. Sometimes I slept through supper or couldn’t complete my work and other times I truly couldn’t wake up for school the next day.
When I turned 16, I worked two jobs and somehow made it through school nights either at Chick-fil-A smiling wider than the Mississippi, or taking care of toddlers at an afterschool care program. I think I wanted to nap more than the kids did, and let me just tell you, “my pleasure”-ing folks left and right certainly didn’t make me any less exhausted.
Looking back, I have no idea how I made it through middle and high school or even college for that matter. You might say, “Well, you were just busy. You worked two jobs and ran a photography business while in school. No wonder you were tired.” OK, fair point, but that wasn’t the case. My friends, whom I rarely had energy to hang out with outside of school, had more things to do than me and they were just fine. In fact, they were more than fine. It was obvious what I was going through wasn’t exhaustion; my body wasn’t working like the “normal” teenagers around me. Something was wrong.
And so the journey of doctors’ visits, sleep studies, blood work, tests and “everything looks fine” results began. Some doctors told me to change my diet, eat more vegetables; others said yoga oughta do the trick; some said it was probably just anxiety or depression.
It wasn’t until nearly 10 years later I was finally diagnosed with a form of dysautonomia called POTS, or Postural Orthostatic Tachychardia Syndrome. And I only got the diagnosis because I was at a regular annual checkup and the nurse couldn’t get the blood pressure cuff to work on me. It kept glowing green with an error message.
“Huh, that’s weird,” she said. “This hasn’t happened before.”
After the doctor manually checked my pulse, she saw my heart was beating 182 beats per minute — too dang fast for the cuff! For reference, an average resting heart rate for a woman my age is about 60 to 80 bpm.
After a few more tests — stress tests, halter monitors, tilt table test, etc. — I was diagnosed with POTS, a condition that affects the autonomic nervous system or everything your body does automatically, such as heartbeat, breathing, digestion, blood pressure, pupil dilation, blood circulation and so on.
The feeling my family and I felt to finally have an answer after so long was truly indescribable. It was so relieving.
October is National Dysautonomia Awareness Month and I’d be remiss if I didn’t spread awareness for others like me — not just those with dysautonomia or POTS, but those who suffer from a chronic illness in general.
After battling a chronic illness for nearly 12 years now, I’ve grown used to it. I still struggle daily but fortunately after my diagnosis, I went through a few trial-and-error treatments but finally found what works for me to help me feel a little bit better. I finally know what’s “wrong” with me and how to fix it and man, that’s really refreshing.
My heart aches for those people out there suffering with something but they don’t know what and doctors can’t find it either. They’re so tired of fighting and just want answers. I’ve been there and probably still would be if it weren’t for that one doctor who finally noticed something other doctors hadn’t.
To those fighting, I see you and I hear you. Don’t give up. Keep researching; keep changing doctors. One day you will finally get those answers you so desperately need.
And to those fighting alongside us, thank you for the support.
To those who don’t quite understand chronic illnesses, that’s OK. It’s hard to understand something you can’t see and also something you’ve never felt. But I promise you, what we go through is so very real and all we want is a little support. All you have to do is listen, be supportive and for the love of all that is good, don’t tell us to eat a doggone vegetable or do yoga.
Santana Wood is managing editor of Tallapoosa Publishers’ newspapers. She can be reached at email@example.com. For more information about POTS or dysautonomia, visit www.dysautonomiainternational.org. More information about chronic illnesses in general can be found at cdc.gov.