In high school, Julie McGovern was an athlete. She was always active and had lived a healthy lifestyle—until one seemingly innocuous dizzy spell.
What she thought was just exhaustion after exercising at first turned into excessive fatigue, sore throat, headaches, and an “all over sickness.”
Her doctor told her it was Mono, but after months of feeling faint and nauseated, she knew it couldn’t just be mono.
She was having migraines regularly, and it always felt like her heart was racing.
She couldn’t even muster up the strength to walk to her mailbox. But the doctor told her there was nothing wrong.
McGovern was told it was probably just anxiety—but McGovern’s life had been overturned by her mystery disease and she needed someone to listen to her.
It wasn’t immediate, but she was finally able to find a doctor who pinpointed what she was suffering: Postrual Orthostatic Tachycardia Syndrome (POTS).
It’s an autonomic disease that affects blood flow in the body. In a normal person, standing up after having been lying down or sitting means your blood flow will regulate itself to circulate to the head and the full body.
In someone with POTS, the blood pools in the limbs and the heart is working double time to try to pump blood, causing dizziness, fatigue, temporary loss of vision, and sometimes even loss of consciousness.
The doctor hypothesized that McGovern had developed POTS around the time she contracted mono, which damaged her autonomic system, affecting all of her organs.
It means every day is a battle for McGovern, who has passed out walking from her house to her mailbox and hit her head on the side of the curb, and once woke up on the floor of her kitchen after having tried to load the dishwasher, and found two large pieces of glass stuck in her arm, leaving her with scars.
McGovern often stands up only to find she’s lost her vision completely, but still keeps walking, knowing that after a few more moments she’ll be able to see again.
It’s effectively an invisible illness.
Which meant that having a diagnosis didn’t solve all of her problems.
Family members, teachers, and even many doctors didn’t believe McGovern’s claims that she was ill.
It all came to a head when she walked out to her car one morning and found a hateful note left on the windshield, with the word “FAKER” scrawled across the envelope.
McGovern’s story, and others, came in the wake of a 2013 Associated Press report that announced an “epidemic” of fakers pretending to be disabled with fake or bought handicapped passes, and sometimes even fake therapy animals. The reports, which were picked up and continually investigated by other media like New York Post and many local newspapers, continued to shed light on huge scale of fraud that was occurring, with millions going to people who were claiming disability for the sake of small conveniences. The stories caused outrage nationwide.
But McGovern wasn’t one of these “fakers.”
“There was a moment of absolute defeat and frustration,” McGovern told The Doctors. “Because for years and years I haven’t been believed by physicians, by family members, by teachers, and to once again be invalidated by someone who doesn’t know me, doesn’t know my story, and doesn’t know how hard I fight just to walk out to my car—was just another slap in the face.”
Tired of not being heard, McGovern took to Facebook to share her story and explain what POTS was.
“Today, my worst fear came true,” she wrote on Facebook.
Sick and tired of not being heard, she decided to share her story and explain what POTS is, asking people to share the story far and wide so as to educate others.
Her story went viral in 2015 and is still being shared as a means to raise awareness by talk shows and online media, and it has also inspired many others to also share similar stories. Many illness are “invisible,” and a person suffering from lupus or cancer may not necessarily look ill.
“I have always been afraid of what others would say and I often sit in my car until I feel no one is around so that they won’t judge me or accuse me of using the system. I am sick. I didn’t choose this and it isn’t my fault. I would give anything to be healthy again. I would give anything to have one day of freedom. Just because a person looks fine does not mean they are,” McGovern wrote.