The Invisible Illness
Hope Whitestone was a healthy and happy 13-year old when she first started to experience the symptoms of an autoimmune illness.
“The first instant that we began to question if something was wrong was during a routine soccer practice,” Hope says. “I passed out from fatigue in the middle of the field and at the time I was only worried about not playing in my next soccer game. My mom and dad began regularly checking my heart rate, comparing the beats per minute while I was sitting, to the concerning speed of when I stood up. She was worried as my older sister Sara, who was 19 at the time, had been diagnosed with the autoimmune illness POTS just the year before. In the same week, I was woken up three separate times from heart palpitations, I remember It felt like my heart stopped beating. Before I knew it, I was bedridden and unable to do things I once loved.”
Hope Whitestone, a now 20-year-old college student at Sinclair University in Dayton, Ohio, has been learning to live with constant fatigue, body aches and pain, and neurological issues such as brain frog, ever since.
Hope was eventually diagnosed with multiple rare autoimmune disorders known as Addison’s disease, Myalgic Encephalomyelitis (ME) and postural orthostatic tachycardia syndrome (POTS), just like her older sister Sara, when she was 15 years old.
There is some evidence that inherited factors may play a role in the development of POTS in some families and the Whitestone family is a prime example.
“An autoimmune illness is basically when the immune system attacks itself. It can begin with a viral onset, as it did in Hope’s scenario. With an autoimmune illness, your body is working to fight the bad, as it should, but the problem is that it keeps fighting and eventually starts to fight the good as well. This can lead to a large array of different chronic illnesses.” Occurring to Lucinda Brown, a pediatric nurse specialist at Dayton Children’s Hospital and Hope’s pain doctor.
“Living with autoimmune illnesses, especially a rare autoimmune illness, consists of a lot of questioning and a lot of tests, but not a lot of answers,” Hope says. “I have been turned away and told that I am not sick because of my age and how I look. I have told my symptoms of pain and exhaustion were nothing out of the ordinary by my doctors.”
Jen Whitestone, Hope and Sara’s mom, has been a first-hand witness to how doctors tend to disregard the symptoms of patients, who are seeking help, but don’t show physical symptoms.
“So many doctors would basically say that Sara or Hope were imaging this or that they just needed to ‘think’ their way out of the pain and fatigue that they were feeling” Jen says.
According to a study by Dysautonomia International, the average time it takes to reach a diagnosis of POTS is more than five years after the initial symptoms of pain and fatigue occur. This is unfortunately the harsh reality for many individuals suffering from an autoimmune illness.
Sara Whitestone, Hope’s older sister, was diagnosed with POTS when she was a first-year student at the University of Cincinnati. Sara created SaraSpins, a nonprofit organization that helped her raise enough money to buy a wheelchair so that she could navigate UC’s campus.
Sara experienced many of that difficulty that comes with being a disabled college student, from being left on the side of the road because the bus driver couldn't take her in the wheelchair to failing her freshman chemistry course because she couldn’t reach the lab benches. “It was some of the most difficult years of my life,” Sara said.
Now SaraSpins is working to raise money and awareness for other individuals who suffer from chronic illness. Her sister Hope has spent countless hours volunteering and advocating for SaraSpins, as she feels passionate about the organization’s mission.
Being immune-compromised, Hope is at a higher risk of facing life-threatening complications from viruses. And now while living through a pandemic, she has to be extremely careful about her exposure.
“It is strange because although life is so different for others during this time, it does not feel that different for me,” Hope says. The whole world is having to learn how to live the way I have been living for most of my life.”
Hope has been housebound, and bedbound, for long periods of time. Being isolated, Hope was unable to take part in normal teenager activities. She couldn’t go to school or socialize with friends, as she was in too much pain and too tired for human interaction.
This past year has left most of the world exhausted from constantly living in a state of fear, but Hope says that this is a part of the everyday life for people who suffer from an autoimmune illness.
“In the midst of this pandemic, I realize the lack of understanding, awareness, and consideration our society has for the disabled community,” Hope says.
Her mother, Jen, has had to help her daughters navigate through life with their autoimmune disorders.
“I have to admit, if it weren’t my daughters who are living through this, I would have difficulty understanding or even empathizing with this,” Jen says. “If you are astute enough to understand that an invisible illness is a chronic and real illness, it’s just a matter of checking in regularly. There are days, weeks, and sometimes months that those with the illness are at a low point and don’t want company or can’t even communicate due to pain and sensitivity to light and sound. And there are times when the individual is just plain lonely and feeling left behind and a visit wherein you just hang out or a phone call to listen to their version of life helps tremendously.”
According to a study done by the Centers for Disease Control and Prevention, U.S. adults reported considerably elevated adverse mental health conditions associated with COVID-19. Younger adults, racial/ethnic minorities, essential workers, and unpaid adult caregivers reported having experienced disproportionately worse mental health outcomes, increased substance use and elevated suicidal ideation.
With mental health issues on a rise this past year, it is no surprise that those suffering from a chronic illness often suffer from mental illness as well.
“Mental health is a huge factor for all people living with chronic illnesses,” Hope says. “The chronic part is never a light thing to hear. I believe mental health can majorly decline because of isolation, physical pain, not eating the way you used to, letting go of sports or other physical activities, and leaving your life behind. Your whole life has to be put on pause, and there’s no expiration date.”
Hope has made it a priority to see a therapist once a week and a psychiatrist once a month. She and her sister say it’s important to find a network of people that understand what they are experiencing. They connected with social media groups and communities for people with chronic illness, which they say helped immensely in feeling less alone.
Hope and her sister and mother all emphasize the realization that our society is built for the abled, not the disabled, which is ultimately the biggest challenge for people who suffer from any type of chronic illness.
“I just wish that people understood the burden of ableism, and how we as a society uphold many institutions that continue to oppress and ultimately end in the death of people who are the most vulnerable, like those with autoimmune disease”. Hope says. “While my body is sick, and that sucks, society also doesn't make it easier on us.”
