Living with Long COVID: Four Years Later, Individuals Share Their Stories
It has been almost four years since the World Health Organization declared COVID-19 a global pandemic, and the effects of the virus continue to be felt by many. Yahoo Canada recently spoke with several individuals who are still living with long COVID, sharing their stories and shedding light on the ongoing challenges they face.
One such individual is Julia Ranney, who was diagnosed with postural orthostatic tachycardia syndrome (POTS) after her COVID-19 infection in 2023 led to long COVID. POTS is a condition that causes various symptoms when transitioning from lying down to standing up, including dizziness, fatigue, and a rapid heart rate. Ranney’s experience with POTS has been life-altering, and she shares her journey of diagnosis and living with the condition.
Ranney recalls the moment she realized something was seriously wrong. “I knew something was really wrong when one day I almost blacked out in the shower. I felt dizzy, nauseous, and my feet turned deep purple,” she says. After consulting with multiple doctors and specialists, she was finally diagnosed with POTS. Ranney’s case is not unique, as many individuals with long COVID have been diagnosed with new illnesses as a consequence of the virus.
So, what exactly is POTS? Postural orthostatic tachycardia syndrome is a condition that disrupts the body’s autonomic nervous system, which is responsible for regulating blood pressure and heart rate. In individuals with POTS, the body fails to properly balance blood vessels and heart rate, leading to dramatic changes in blood pressure and heart rate. This can result in symptoms such as dizziness, fatigue, and rapid heart rate. Additionally, blood may pool in the legs, causing changes in color.
POTS can develop after an infection, condition, or disease like COVID-19, diabetes, Lupus, or Lyme disease. It can also occur after contracting anything that attacks the autonomic nervous system. Ranney’s diagnosis came amidst her battle with long COVID, and she experienced extreme fatigue and lightheadedness as her primary symptoms. Basic tasks became challenging, and her mental health was severely affected. Despite being initially dismissed by her doctor, Ranney persisted in seeking help and eventually found support through an online Long COVID clinic specializing in POTS.
To confirm her diagnosis, Ranney underwent tests to measure her heart rate while lying down and standing up. The results showed a significant increase in heart rate when transitioning from lying down to standing up, a key indicator of POTS. She was then referred to a rheumatologist and cardiologist for further examination, which confirmed her COVID-induced POTS. Studies have shown that approximately 30% of COVID long-haulers qualify for a POTS diagnosis, highlighting the significant impact of the virus on the nervous system.
Living with POTS has drastically changed Ranney’s daily life. Due to her fatigue and symptoms, she must carefully plan and organize her activities. She has calorie restrictions and cannot stand for long periods of time. Simple tasks like making tea or doing her hair and makeup require breaks or sitting down. Social events require extensive rest before and after. Ranney’s treatment plan includes lying down for at least 15 minutes every hour, consuming a high amount of salt to maintain blood pressure, staying hydrated, and wearing compression pants to prevent blood pooling.
The challenges don’t end there. Heat can trigger dizziness for Ranney, which means she has spent most of the summer indoors while her friends and family enjoy outdoor activities. However, despite the heartbreak and frustration, Ranney remains hopeful. She acknowledges that symptoms can come and go over time for many individuals with POTS, and with the support of her medical team, adjustments in diet, physical activity, and medication can improve her quality of life.
Above all, Ranney emphasizes the importance of her support system. Her family, friends, and colleagues provide the strength and encouragement she needs on difficult days. She refuses to let POTS define her and is determined to live a fulfilling life beyond her condition.
Living with long COVID and POTS is an ongoing battle for many individuals. As we reflect on the four years since the pandemic began, it is crucial to remember the long-lasting effects of the virus on individuals’ lives. By sharing their stories, individuals like Julia Ranney shed light on the challenges faced by those living with long COVID and inspire hope for a brighter future.
