In the Uncertainty of Chronic Illness, A Young Woman Finds Reasons to Live | Stories of Hope | Aldis Petriceks | Almanac Online |

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By Aldis Petriceks

In the Uncertainty of Chronic Illness, A Young Woman Finds Reasons to Live

Uploaded: Nov 6, 2017

When Jennifer Thompson’s ribs began to crack, people started taking her seriously.

By that time, Thompson – now twenty-two – was eighteen years old, and had been through enough pain for a lifetime. That pain had begun with a strange fatigue around her eleventh birthday, and intensified month by month, year by year.

But by the time Thompson entered her freshman year of high school, fatigue became a secondary concern. Her immune system was failing; every classmate’s cough promised to bring new illness. Her Sophomore year, Thompson gained twenty pounds in one month; the fatigue worsened; she had to drop classes. Come Junior year, she caught a massive flu infection, which shut her body down midway through the semester. Her energy, her vitality, were gone.

Thompson never fully returned to school. She did not graduate with her best friends, nor attend college. Instead, she bounced back and forth between clinics – receiving examinations, intravenous antibiotics, and confused glances from doctors. Her symptoms were so systemic, so debilitating; yet so intangible, so ephemeral.

Doctors started to doubt. Where was the cause? How were the symptoms connected? Who was this girl? The answers seemed to point in one direction: Thompson was lying about her illness.

“Then I cracked most of my ribs from coughing. People thought that was weird.” After that, the physicians knew something was wrong. But doctors still saw nothing more than a mesh of symptoms in this eighteen-year-old girl; their next steps were shrouded with uncertainty.

“I started to fall apart a lot faster; I lost like thirty pounds in three weeks,” Thompson recalled, of what would have been her Sophomore year in college. “It just seemed like I was not going to last that much longer.” Thompson’s mother – sensing that the healthcare system was failing her daughter – brought Thompson to an experimental treatment center, where she would remain, on and off, for the next three years.

“The first thing they noticed was that my blood pressure was plummeting… if it had gotten much lower it was ‘hey, you’re going to be in a coma.’” Then the pain spread through her body, “they diagnosed me with fibromyalgia. And for the blood pressure they diagnosed me with POTS (Postural Orthostatic Tachycardia Syndrome). My mom told the doctors: basically, my daughter’s body is falling apart. But you’re not telling us why.”

The mother, trying to make sense of it all, had a realization: Thompson’s older sister had suffered from Lyme Disease years earlier. The sisters’ symptoms were different, but similarly systemic and confounding. Thompson was taken to her sister’s old physician; she did have Lyme Disease. Doctors immediately started Thompson on oral antibiotics – standard procedure for newly-diagnosed Lyme patients.

Then, standard procedure failed; and it continued to fail. Antibiotics, IVs, and bed rest were all tried. Thompson’s condition worsened. She began to doubt the medical system’s comprehension of Lyme, thinking “maybe we don’t know everything about this disease.” Thompson also began seeing more-specialized physicians, who took increasingly-narrow views of her condition: “When your health is crashing like that, and you have something special… specialists don’t see much outside their expertise. When you have a systemic infection, your whole body is affected.” Her treatments, one after another, were ineffective. Doctors grew frustrated, and vexed with Thompson herself: how could a girl so young, with such a clear diagnosis, present with so many complex symptoms – all of which evade cure?

“Saying ‘Lyme’ to a doctor is like saying you’re pretending to be sick; that’s what they hear,” said Thompson. So, months after diagnosis, and over seven years since her symptoms began, Thompson was stuck in two webs: one, of systemic and complex illness; the other, of systemic ignorance surrounding Lyme Disease.

Lyme Disease itself is a common infectious disease, caused by bacteria of the genus Borrelia. During infection, these drill-shaped microbes (known as Spirochetes) spread throughout the body – into the skin, bloodstream, nervous system, and other somatic systems. Wherever the pathogen lodges, the host immune system goes haywire – explaining the diverse set of symptoms which Lyme entails: fatigue, fever, joint pain, neurological dysfunction, cardiovascular issues, and migraines, to name a few. The CDC estimates (conservatively) that around 300,000 people are infected in the US each year – making Lyme America’s fastest-growing vector-borne disease.

Yet tremendous controversy surrounds this disease, especially for chronic sufferers. Long-term Lyme treatment can cost upwards of $70,000 USD; the duration of that treatment is often uncertain. Insurance companies rarely cover anything beyond a few weeks of oral antibiotics – the “standard” approach Thompson received. After that, patients and doctors must fend for themselves. In fact, insurance companies have often threatened, or even sued, physicians who address chronic Lyme Disease.

“I meet a lot of doctors that go: ‘I don’t know a lot about Lyme; but I’m also not willing to learn.’ That is heartbreaking.”

As her health continued to go, Thompson was losing her very personhood as well. Her friends were out exploring college life, while she was lying in hospital beds; her doctors were drowning her in medical jargon, and accusations of neuroticism. All the while, this young girl – barely twenty years old – was left to make sense of her identity.

Remember: Jennifer Thompson was a teenager when her battle with Lyme began. Her identity was barely in its infancy when it came under attack: “I was so concerned with how my life looked. My body is falling apart physically, and my first thought is: how is this looking to colleges? How is this looking to my peers?” Before Thompson could construct security for herself, the support beams around her were crumbling. She was facing every pressure to live a pre-determined life – replete with good grades, late nights, and schoolgirl crushes; those pressures were magnified in the eyes of a sick and bedridden teenage girl.

“It was just this deep denial. I spent more time fighting against the idea that something bad had happened than fighting against my disease. The pressure from society to be in a certain place, be a certain person, was so suffocating. Honestly, I think that’s a problem.” The burdens of illness can be overbearing; they were made near-unbearable by the world around her. For Thompson to lucidly acknowledge her situation was to accept failure, was it not? How could she allow herself joy, while failing all the cultural prerequisites?

In this medical context, Jennifer Thompson put forth a logical self-inquiry: “Am I going be healthy at the end of this?” But then, she did something which many young people – many adults, in truth – never do. Instead of answering the first question, she followed up with a second, and a third, and a fourth:

“My life has almost been taken from me so many times, it was like: okay, I really do have a limited time here. How do I want to spend my life? Who do I want to spend it with? At the end of it, what do I hope has been done?” Her illness had begun with denial, an oppressive need to regain a life unfairly-taken; now she wanted to see her life for what it was. She wanted to live her life for who she was.

Those honest questions – flickers of personhood in the darkness of expectation – began to unravel the web which had engulfed Thompson’s mind. Her illness, originally a barrier to joy, became a lens through which she saw clearly. As time passed, she fixated less on missed schoolyears, or yet-unreceived accolades. She focused more on what defined her as a human, when all the fancy-dress of daily life was stripped away. In those hospital beds, Thompson had no one to perform for; no one to deceive into thinking she had it all together – who would believe her? No longer did she obsess over the life she once desired. Instead, she wondered if that life was ever worth having at all.

“Who knows if it’s actually what I really would have wanted? Especially around [Silicon Valley, there’s really only one direction people see for themselves. You grow up believing that’s what you need and what you want; you never know if deviating might be the best thing for yourself, but that’s never an option.”

Her disease threatened to take her life; she fought to live. The culture threatened to steal her identity; she found her personhood. “I think I’m a happier person over all, because all the good moments mean so much more to me… even though the majority of moments are really hard, I can’t say that I’m not still feeling grateful – because I’m still here.”

Of course, Thompson did not arrive at this perspective on her own; she had tremendous support from family and friends. Thompson credits her mother with saving her life – it was she who first suspected Lyme Disease, she who believed Thompson was sick when many thought otherwise. Thompson’s father worked tirelessly to pay for the Lyme treatments which health insurance would not cover. Her friends visited regularly in the hospital, bringing a much-needed sense of normalcy with them – discussing everything from the Kardashians, to the latest Top 40 hits.

Sure, some people continued to doubt. Many doctors sustained their skepticisms about chronic Lyme Disease. Even supposed friends insisted that Thompson couldn’t truly be so sick. But neither denial from her caregivers, nor distrust from her peers could blackmail the steadfast, unwavering love of Thompson’s closest supporters.

“It is hard to see people give up on you, or ignore you… but what stands out and shines so much brighter are my friends and my family.” Though Thompson currently feels less than half-recovered, she finds herself so often moved by the radiance of that love: “You honestly don’t know what somebody is willing to give up for you until it happens.” Even strangers, and those facing their own severe illnesses, constantly reached out to Thompson, providing strength when she could not find it. And, as if her story were not sufficiently tear-jerking, Thompson had a loving boyfriend through it all:

“His mission is to make me smile every day. Every day starts with not just ‘How can I make today better or easier for you?’ but ‘How can I make today good for you?’ To have that love has been one of the best gifts ever.”

Today, at twenty-two, Thompson has suffered seizures, heart failure, extreme weight loss, and fatigue – yet still finds reasons to fight, love, and live each day. That strength does not preclude her from everyday obsessions, though: she stills ogles over cute shirts, still follows celebrities on Instagram. She also, at times, falls into self-victimization: “When you’re separated for so long from others… all the horrible, bad stuff you’re going through just looks so much bigger, and it’s clouding your vision from what’s on the outside.”

But more often, Thompson recognizes the importance of compassion, and reminding herself of what really matters. She continues to fight for her health; she also fights for others, knowing that many people with chronic illness must be their own advocates. Many will be disregarded by their doctors and peers, or accused of lying. Thompson was treated the same way, and it nearly killed her.

For those around the chronically-ill, Thompson recommends compassion: “Be patient, try to delve deeper [into the disease. Be open about what this person says,” because the other option is callous self-interest – that is how people and communities lose their humanity. Once, a woman approached Thompson in a grocery store, having noticed her handicap parking permit. The woman told her, “you are so lucky to be able to park in the handicap spot.”

“Your whole life is that handicap spot,” Thompson thought at the moment. But she never voiced that thought; she knew the hurt which judgement can bring. So today, Thompson counters indifference with love. She advocates for Lyme patients, who only receive an average of $133 per year to fight their disease. She reminds her peers that people with chronic illness experience the world differently than healthy people do – brushing teeth, or cooking breakfast, can empty their daily energy quotas. And she persistently tells doctors and supporters: there will not always be simple, tangible causes to point to; but we must always listen to our patients and loved ones. To do anything less is to deny them their dignity.

Jennifer Thompson’s battle with Lyme Disease has brought her a sense of presence, and gratitude for every moment. Thankfully, her growing strength now allows her to consider the future as well. She thinks about resuming school, building her body back, and finding a job one day. She wants to travel the world with her steadfast, unwavering boyfriend. She yearns for the health to have a family down the line. Ultimately, having lived half her life through severe, chronic illness, Jennifer Thompson wants what everyone else does: a life full of joy, meaning, and love. She wanted all those things before Lyme Disease showed up.

Now, she just knows where to find them.
NOTE: The subject's name has been changed for the sake of privacy. I want to thank her nonetheless, for exuding such strength and humility in the face of debilitating illness. She was truly a joy to talk with.