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Living with an Invisible Illness

Updated: Oct 20, 2022

Just over a year ago, my life changed. I was a functioning, fit, driven and happy 14 year old. Truthfully, I have no idea what happened. One day, I was living life normally…and the next, I was struggling to get out of bed. I developed crippling headaches, dizziness, fatigue and chest pain that stopped me from going to school for 2 months. These weeks were filled with doctors appointments, tests and a lot of pain. I was finally diagnosed with an autonomic condition called POTS.

Postural Orthostatic Tachycardia Syndrome, a form of Dysautonomia, is an invisible illness Over 70 million people worldwide suffer from one of the various types of Dysautonomia. Thisumbrella term categorizes the dysfunctioning of the autonomic nervous system. This system controls all of the functions that we do not consciously think about, such as blood pressure, digestion, temperature control and kidney function. POTS specifically is categorized by one main factor: symptoms that occur whilst in an upright position. POTS patients, such as myself, will have at least a 40BPM rise in heart rate when moving from a sitting to standing position. This is because blood pools in our lower extremities and so the heart has to compensate by pumping extra fast to move the blood around our bodies. With this rise in heart rate often comes a large drop in blood pressure. This often will lead to fainting or lightheadedness from the lack of blood in the head. Because the autonomic system controls so much of the bodily functions, POTS patients can have many different symptoms. The most common ones include fainting, brain fog (difficulty focusing), fatigue, headaches, gastrointestinal issues and heart palpitations. This large range of symptoms can make POTS very difficult to identify and diagnose. It takes roughly 6 years to diagnose the average POTS patient and 50% have to travel more than 100 miles to receive care. Despite the illness being somewhat common, there is so little research, causing a huge diagnostic delay, or no diagnosis at all. The lack of research also means there is a lack of awareness within the public, as well as within the medical community. When I told one of my nurses at the hospital that I had POTS, she thought that I was taking pot, not that I had an illness. This experience was quite difficult for me and is most definitely not an isolated incidence.

I was extremely lucky that I had an incredible doctor who was aware of POTS and the different forms it can present in. I was diagnosed within 2 months, which is practically unheard of for a POTS patient. Whilst I was still awaiting a diagnosis, I was barely functioning. I couldn’t read or go on any electronics, and could barely get off of the couch. Once I had the diagnosis, I was put on different medications that dramatically helped. I am now quite high functioning, and, although I’m far off from where I was before POTS, I am grateful for how much I have improved. 25% of POTS patients are disabled and unable to work. This can be an extremely debilitating illness, and I am humbled by all the stories I hear of people who are struggling a lot more than me.

The most difficult part of having POTS is that I appear to be completely fine. An invisible illness is a medical condition that does not exhibit visible symptoms. 96% of people with chronic illnesses suffer from an invisible illness. The reality of these illnesses is difficult for other people to recognize and identify because they may not see evidence of the issue or understand the cause. It is easy for other people to question your symptoms, meaning it is really difficult to advocate for yourself.I have struggled with the fear that other people do not believe me and think I am using my illness as an excuse. These feelings of insecurity and vulnerability are not an anomaly, as millions of chronic illness sufferers worldwide do not feel seen or heard by their community and suffer in silence. The increased understanding and empathy for those suffering from invisible illnesses is key for a more inclusive and respectful society.

My POTS isn’t life threatening, but it’s life changing. The illness dramatically altered my perspective and opened my eyes to the difficulties that so many people face. It has taught me resilience, patience and profound gratitude for my support network. My illness has taught me to trust in my own abilities, and, most of all, has shown me that I have an immense amount of strength and perseverance. I hope that we as individuals and as a collective community can come together to empower the voices of those suffering from invisible illnesses, and support each other in the difficult journeys we face.

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