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    • VACCINE RECOMMENDATION:  DINET encourages all its members to receive the vaccinations and boosters for COVID-19, unless specifically advised against it by your medical provider.  To better understand the virus, the vaccine and the effects on people living with dysautonomia, please watch Dr. Svetlana Blitshteyn's video "COVID-19 and Dysautonomia"

Meet the Member - Kat's Story by Chelsea Goldstein


Goldstec

Kat is a thirty-three year old mother, teacher’s aide and student living in Melbourne, Australia. She has always been a strong, active and independent woman.  Kat once walked eight kilometers (4.9 miles) each evening, was very active in her son’s school, and worked as a teacher’s aide until POTS altered her life in an instant.

When she first experienced symptoms, Kat contacted her general practitioner. Despite his best efforts, he was unable to properly diagnose her after ruling out migraines, chronic sinusitis and even a spread tooth infection. At thirty-two, her symptoms progressed to the point where she failed to remember her son’s birthday party and felt generally unwell. She visited the hospital for the first time in ten years. The attending physicians ran a myriad of tests and ultimately dismissed her symptoms as anxiety—one even went so far as to comment that she was wasting a hospital bed that could be useful for a truly sick person. She spent over a week in the hospital, where many of the health professionals continued to treat her condescendingly. She was only diagnosed with POTS because one night nurse noticed that her blood pressure dropped upon standing. This discovery led her to take notice of Kat’s cold, blue feet and her tachycardia. Kat was diagnosed with POTS and sent home with some medication.

While Kat feels that the medication does help, her life has been dramatically altered by POTS. She can no longer care for her son alone,  and has had to significantly cut back on her working hours.  Occasionally Kat has to use a walker or wheelchair to run errands and is not able to drive in the afternoons when her symptoms peak. These struggles have made her feel alone, and not able to trust her own body.  Kat feels very dependent, too dependent on her loved ones. Most significantly, she has guilt for not being the independent woman she used to be, with the ability to care for her son on her own and remain active in her community.

In interviewing Kat, I could empathize with the very sudden and devastating physical limitations POTS has brought to her life. Yet, I could feel her independent, even optimistic spirit shine through her words. Since POTS often confines her to home, she is getting her Bachelors of Primary Education online to maintain engagement on her tough days. Though she feels guilty about the added responsibility POTS has placed on her loved ones, she also talks about how her relationships with them have grown in deep, meaningful ways. She reminds herself to have faith in and patience with one of the most important people in her life—Kat. She realizes how far she has come since her diagnosis, as well as understanding that POTS can be a terrifying, unknown disease. She discusses that she is learning it is okay to be scared.

Kat is an inspiration for those of us (which I venture to say is many of us) who feel that we are to blame for our Dysautonomia. We feel guilty for losing our former selves, increasing “burden” on our loved ones and not living up to society’s standards of being productive citizens. Most days we want to return to our old selves, but Kat—through her own practice of self-love—reminds us to appreciate where we are today. Her insight also teaches us that we will not get self-love right every day, and it is okay to feel angry and scared through the daily battles we face. Most importantly, she talks about how many people cannot see our struggles - sometimes not even health care professionals. In a world where we may be dismissed as hypochondriacs, or are told our symptoms arise from “just anxiety,” we are quick to judge and question our own experiences. Kat reminds us “not to let someone else tell you how you feel inside.”  A lesson from which we can all draw strength.

Return to Newsletter Table of Contents - December 2017




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