If you have been following me on social media for a while or recently found me on TikTok you may already know that over the past 5 years I've been living with an invisible and disabling condition we now know as Postural Orthostatic Tachycardia Syndrome (POTS). POTS is a complex disorder that ,most people have never heard of or know very little about - and that includes Doctors. It is a condition that presents as a myriad of other conditions as it affects the whole body and is often accompanied with symptoms of anxiety. This means it is easily misdiagnosed, not taken seriously, or ignored completely. However this condition is on the rise (in part because of the Covid 19 vaccine) and it is now known to affect millions of people world wide. POTS is a condition that affects the autonomic nervous system, resulting in a rapid heart rate upon standing. This condition can significantly impact the lives of those who experience it, influencing their physical, emotional, and social well-being - something I know well first hand. In this blog, I will get into what POTS is and explain its effects on the daily lives of people like myself living with this challenging condition.
Understanding Postural Orthostatic Tachycardia Syndrome (POTS):
Postural Orthostatic Tachycardia Syndrome is a form of dysautonomia, a dysfunction of the autonomic nervous system responsible for regulating automatic bodily functions such as heart rate, blood pressure, vision, urination, and digestion. POTS is characterized by a heart rate increase of 30 beats per minute or more upon standing, often accompanied by various symptoms like dizziness, lightheadedness, fatigue, brain fog, and heat and exercise intolerance. Although POTS can affect anyone, it is more commonly seen in women aged 15 to 50. And contrary to what some Doctors may say, its is not a condition you will "grow out of with time" - with the exception of getting it from things such as pregnancy or the Covid 19 vaccine. People who experience POTS as a result of those things may see improvement in 1-2 years, where as most other individuals with the condition will remain affected by it for the rest of their lives.
Physical Challenges:
Individuals with POTS often face physical challenges that significantly impact their daily lives. The rapid heart rate and blood pooling in the lower extremities can lead to fainting or near-fainting episodes; making standing or even sitting for prolonged periods difficult. Simple tasks like showering, cooking, or grocery shopping may become exhausting or impossible to accomplish without assistance. Fatigue, weakness, and chronic pain are also common symptoms, further limiting physical activities and hindering overall quality of life. In extreme cases such as my own you may even see seizure like convulsions due to an extreme lack of oxygenated blood in the brai
Emotional and Cognitive Impact:
Living with POTS can take a toll on one's emotional and cognitive well-being. The chronic nature of the condition, coupled with the unpredictability of symptoms, can lead to feelings of frustration, helplessness, and isolation. POTS patients often struggle with anxiety and depression, which can further complicate their daily lives. Brain fog, a cognitive symptom experienced by many POTS patients, affects memory, concentration, and overall cognitive function, making tasks like studying or working challenging.
Social Implications:
POTS also has significant social implications, as individuals may find it difficult to participate in social activities, maintain employment, or pursue their education. The limitations imposed by the condition, such as the need for frequent rests, use of the bathroom, or accommodations for physical exertion, can make it challenging to maintain social connections. In addition most POTS patients are unable to consume alcohol, sugary foods, walk long distances, be exposed to the sun or heat, or go anywhere for more than an hour. This makes social outings with physically well and healthy people extremely challenging to the point that most POTS patients will simply just not go in fear of over exertion. Feelings of isolation and a reduced ability to engage in hobbies or previously enjoyed activities further impact a person living with POTS's sense of belonging and self-esteem.
Coping Strategies and Support:
Despite the challenges posed by POTS, various coping strategies can be adopted and patients can seek support to manage their condition effectively. This may include lifestyle adjustments such as implementing a regular exercise routine (under medical guidance), maintaining hydration with lots of electrolytes, wearing compression garments, and following a balanced diet. Additionally, medical interventions like medication and physical therapy can help alleviate symptoms and provide emotional support. Peer support groups and online communities can also offer a valuable network of individuals who share similar experiences, providing a sense of understanding and belonging.
Postural Orthostatic Tachycardia Syndrome is a complex disorder that significantly impacts the lives of those affected. Physical challenges, emotional and cognitive impact, and social implications create a unique set of obstacles for individuals living with POTS. By understanding the condition and seeking appropriate medical care, individuals can develop strategies to manage their symptoms effectively and improve their overall quality of life. Moreover, fostering a supportive community and raising awareness about POTS can contribute to a more inclusive society that accommodates the needs of individuals with chronic conditions like POTS.
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