Her face looked tired and ashen when she opened the door to me, but she was smiling. It was August 2020, and I had travelled from Sydney to the Mid North Coast to visit my mother. I could only stay the one night, and after months of my isolating in Sydney’s lockdowns, she was desperate for my company.
“Stay up, talk to me!” she said excitedly as I laid down on her brown couch. I was more lightheaded and tired than usual, and my heart pounded in my ears every time I stood up. With no energy to talk, I soon dragged myself off to bed early, giving my mother’s disappointed face a quick kiss goodnight.
In the spare room, she had made up my bed with clean sheets and fresh towels and a handwritten note. A pang of guilt twitched inside me – a feeling that grew the next morning at the airport. My mother and aunt had come to wait for my flight, just to spend more time with me. Still exhausted and lightheaded, their fussing only irritated me. Eventually, I told them both to go home, so I could be alone. My mother smiled weakly as we parted.
Three days later, she was found unconscious, and died that night in hospital. She was 68, and I was 26.
I was drowning in guilt. Why didn’t I stay up to talk to my mother that night?
She suffered at least three cardiac arrests, and most likely a massive heart attack before being found. I just made it back to the Mid North Coast that night to hold her hand as she passed, but my all-encompassing grief was instant.
I was drowning in guilt. Why didn’t I stay up to talk to my mother that night? Why hadn’t I insisted on her taking better care of her health? But there was something else unnameable in my anxiety and grief.
Standing in front of a mirror one day, I saw it. My face looked tired and ashen. Panic coursed through my body as I contemplated my own mortality in relation to my mother’s. Why am I lightheaded all the time? Why does my heart pound in my head at the slightest exertion? What about that weird chest pain? There must be something wrong with my heart, I decided. I am going to die young, too.
As the months passed and my grief began to ease, I started to pay attention to the worsening symptoms I had been living with since I was 13: the heart palpitations and chest pain; the near-faintings in the shower and during exercise; the inexplicable nausea; and the lightheadedness, extreme fatigue and overwhelming urge to lie down.
Confiding in my doctor one day, I relayed my lifetime of symptoms, and the odd, isolating lifestyle adaptions I had normalised and hidden from everyone else: avoiding visitors, sitting down in the shower and doing everything possible while lying down at home.
It ultimately took multiple doctors including two cardiologists, numerous tests and over $2,000 in medical bills, but I finally got my diagnosis: POTS, , a relatively common yet largely under-diagnosed blood circulation disorder.
I relayed my lifetime of symptoms and… finally got my diagnosis
Mostly affecting adolescent women, POTS is a disorder of the autonomic nervous system in which a person’s blood pools in their lower body when they sit or stand upright. In a failed attempt to pump more blood to the brain, the heart beats faster, resulting in fainting or near-fainting, a rapid increase in heart rate, fatigue, headache, blurry vision, nausea and intolerance to heat and exercise. The tell-tale sign of POTS is that these symptoms worsen upon sitting and standing, and are partially relieved by lying down.
Two years after my mother’s death, my POTS diagnosis has alleviated the worst of my health anxiety. Having since joined support groups for POTS sufferers, I’ve realised it’s not uncommon for undiagnosed POTS sufferers to catastrophise their symptoms as heart disease. It’s also common for sufferers to have their symptoms dismissed by medical professionals as anxiety, which is exactly what happened to me during a trip to the emergency department for chest pain and heart palpitations.
Though I now know that I (probably) won’t drop dead from a heart attack tomorrow, I still grieve the life POTS has taken from me. Like many POTS sufferers, I feel betrayed by it, particularly in missing out on spending quality time with people I love – like my mother that night, sitting alone on that brown couch.
