Seven years ago today, at the age of 16, I had a major POTS episode. But at the time, I didn’t know it was a POTS episode. I was undiagnosed and blamed the whole event on myself, my interpretation of my own laziness, my inability to take care of my body.
My heart rate was sustained at 180+ BPM for close to two hours with a mess of other symptoms (nausea, blurred vision, I was white as a ghost, pain in all of my joints, etc.) and I ended up sleeping on the floor of the bathroom with gastrointestinal problems. My mom tried to take me to the emergency room but I was a headstrong teenager and refused. I reasoned that I was just having a stomach flareup and the tachycardia was a response to me being very out of shape after doing a bit of running around in the heat of summer.
Because for years, those were the things my cardiologists had told me when we asked about my tachycardia.
“You’re fine, you’re just out of shape.”
That night, my mom texted my psychiatrist, the only doctor along with my therapist who believed there might be something else at play besides “harmless” tachycardia. He told my mom to take me to urgent care as soon as possible.
They performed an EKG and they said there appeared to be nothing wrong, but sent me to the hospital where they performed an echocardiogram. Everything was structurally sound. We made appointments with my cardiologist. I didn’t get much help there.
You’re fine, Shannon. Drink more water. Add more salt to your diet. But you’re fine. Nothing’s wrong.
They did a holter monitor a few months later. They never really addressed the tachycardia, the fatigue, the chronic pain, any other symptom. They just referred back to the EKGs and echos. You’re fine, Shannon. You’re fine, you’re fine, you’re fine.
Seven years later, to the day, I just finished up my fourth conference with Dysautonomia International.
For four years, I have now known that I’m not “fine.” My autonomic nervous system is a disaster. Standing up, even for 10 minutes, makes me lightheaded, gives me brain fog, turns my hands bright red and makes my back feel like a twig that might snap into two.
For four years, I have had a new team of cardiologists who believe me. They run EKGs and echocardiograms and holter monitors and even when they come back “fine,” they know that the rest of me isn’t. They know that I navigate a long list of symptoms every day of my life and there’s no saying what comes next symptomatically.
For four years, my psychiatrist and therapist have been able to help me cope and learn to navigate my new normal, my new life with a chronic illness. It’s not easy, it’s not fun, but we now know what we’re dealing with. We know the card we’ve been dealt. We’re no longer in the dark.
I’m so grateful to be here, now, with the resources available to me so I feel less alone. To have friends, support, physicians and information that will keep me going for as long as I have this illness (very possibly the rest of my life.)
I’m had such a lovely weekend surrounded by hundreds of people with this shared experience of dysautonomia–whether it’s the patient or caregiver perspective, we’ve all gone through the journey of “WHAT IS HAPPENING” and have gotten to (or will get to) “OK, we got this.”
It’s not the same as it was seven years ago.