The Battle of Living with Chronic Invisible Illness

Invisible Illness: The umbrella term for a mental or physical disability which is not visible to the naked eye

As a 22 year-old living in New York City pursuing a professional dance career, the term “chronic invisible illness” was not something I was ready to paint into the picture of my life.

As of May 2019, I was diagnosed with a condition called POTS Syndrome, standing for Postural Orthostatic Tachychardia Syndrome. As it’s a handful to pronounce, it’s an even bigger handful to try to explain to each doctor, friend, or colleague I have had. The syndrome targest women of ages 18–40, and effects the body’s ability to regulate heart rate upon switching body positions and circulate blood correctly. So, you may be thinking: And you’re a dancer?

An aspect of POTS that confuses medical professionals is the fact that there is a vast spectrum of cases, creating a different experience for every individual who has been diagnosed. Only 30% of patients with POTS experience fainting episodes, while many experience a certain degree of fatigue and lack of temperature control. I was blessed growing up with consistently engaging in athletic activity, because my body learned to tolerate certain levels of cardiovascular exercise at an early age, creating an advantage in terms of body movement, and of course, dance.

While being blessed in that aspect, I experience fainting episodes, daily fatigue, lack of temperature control, and a responsibility to maintain sodium and electrolyte levels at all times. This is where some peoples’ confusion with my condition comes into play.

Shouldn’t you not eat that much salt?

Why can’t you be on time in the morning?

Why do you always have a ton of Gatorade?

You look so healthy.

I have come to terms with many of my symptoms, but I realize that I still struggle with navigating the explanation of my condition to friends who are my age. I do not blame them for never hearing of my syndrome (many medical professionals even haven’t), however, at times I feel slightly isolated. Being surrounded with dancers and hardworking athletes, my head gravitates to reflection of: What would I feel like if I didn’t experience having POTS for a day?

There is a certain level of responsibility for owning your illness. While you do not have to take pride in your diagnosis, recognizing your knowledge, control, and awareness of it is not only empowering, but crucial. Similar to your family, chronic invisible illness is something you will be engaged with for the majority of your life. Like anything, this is a topic such that I can make light and humor of some of the time, but not all the time.

One of the things about chronic invisible illness is the moments in which you are doing everything possible to feel better, and it is still not enough. This feeling is one mutually shared with patients of dysautonomia, the umbrella term for autonomic dysfunction, which POTS Syndrome falls under. Community creates power. The more people who can resonate to each other with illness, or similar feelings, the more they can work together.

An open message to anyone living with chronic invisible mental or physical illness: You are your strongest supporter. Build your support system, find your main medical quarterback, but most importantly, be your own advocate. The “passive patient” should be left behind in the medical workplace — you are your own spokesperson, and the next time you enter a doctor’s office, practice acting like one.

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Fordham University, Public Media MA Program — Multi-Platform Journalism

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Miranda Stuck

Miranda Stuck

Fordham University, Public Media MA Program — Multi-Platform Journalism

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