How society treats illness reason for book on Lyme

Writer Allie Cashel begins her new book, “Suffering the Silence: Chronic Lyme Disease in an Age of Denial,” noting that a dismissive approach by doctors to a patient’s Lyme disease symptoms “can leave those suffering without an advocate — at a time of perhaps their most desperate need. ... As a result, they are forced to live shadow lives, plagued with disabling symptoms and yet often dismissed by the medical community and by our society as being mentally, rather than physically, ill.”

Though 24-year-old Cashel experienced those feelings of isolation and marginalization during her 16 years as a Lyme and tick-borne disease patient, she said she hopes her book, which weaves her own health history with information about Lyme and interviews with people with the disease, will help those suffering from chronic illnesses to know they’re not alone.

During her undergraduate years at Bard College, Cashel started working on the book and will return to the Annandale campus Sept. 28 to talk about the book and sign copies for the public.

Multiple tick-borne diseases

Initially, Cashel’s Lyme disease presented in what most people know of as a “typical” case. She was 7 years old and living in Westchester County when she was bitten by a tick and got the telltale bull’s-eye rash. Diagnosed with Lyme, she took a normal course of antibiotics and felt better; it was assumed by her family and doctor that she was “totally fine.” It wasn’t until she was an adolescent that she began having more serious, painful and frightening symptoms, which she said she believes stemmed either from that initial Lyme case years before; being re-infected; or from one of the other tick-borne diseases — babesiosis, ehrlichiosis and bartonellosis — that she most likely contracted from that first bite, but which were never properly diagnosed or treated.

The U.S. Centers for Disease Control and Prevention estimates that nationwide, about 300,000 people are diagnosed with Lyme each year. Dutchess County had the highest number of confirmed cases between 2007 and 2011 of any county in the state — 1,867 cases — and the eighth-highest total in the nation, according to the most recent five-year block of data published by the CDC. Ulster County ranked nationally 11th with 1,695 cases.

Cashel was not only plagued with serious pain, fatigue and neurological problems, but she also found herself bumping up against doctors and others who expected her disease to take a different path, and she often found herself dismissed when she sought help. She stressed her experience is not unique to Lyme.

“The heart of this project is tick-borne disease, but the more people I meet across the illness board the more I learn they’ve experienced very similar levels of dismissal or the feeling that people are not interested in their experience,” she said. “This is not just a Lyme issue; it’s how society treats illness. What drives the book is a much bigger conversation. We have not found ways to support people with chronic conditions in day-to-day life, not just medical, but social support, familial support and spousal support.”

In the forward to “Suffering the Silence” (Sept. 8, 2015; North Atlantic Books; $17.95), Dr. Bernard Raxlen of Lyme Resource Medical in New York City said the denial of tick-borne illness “is supported and maintained by an elaborate hierarchy of official misinformation.

“Laboratory testing is often inadequate or completely misleading,” he said. “As seronegative Lyme disease is denied by insurance companies, patients who have negative blood test results won’t be offered treatment. ... Worst of all, the IDSA (Infectious Diseases Society of America) guidelines, which do not recognize the existence of chronic Lyme disease, and recommend only minimal treatment, are dangerously inadequate. These outdated guidelines are still used by infectious disease specialists to diagnosis and treat Lyme, as well as by specialists in neurology and rheumatology. And, on the strength of those guidelines, every day insurance companies deny patients coverage they desperately need.”

Making connections

Cashel started working on “Suffering the Silence” at Bard College. She said she’d never wanted to write about Lyme and found tackling the topic frightening, but her professors encouraged her to reflect on something in her own life she’d be able to write in-depth about, so even though she wasn’t yet ready to share her own experience, she was interested to find out more about what others had gone through. The summer before her senior year she began doing interviews with Lyme disease patients.

“I was so moved by the power of people’s stories,” she sid. “It lit a fire under me, and made me feel that this was happening to too many people and it was not OK.”

As others opened up to her, she said she began opening up as well.

“I’d never really spoken to anyone outside of my family or immediate friend group about this, and (my project) forced me to share my story,” she said. “I was so terrified to do that.”

For years, Cashel said she feared being labeled a liar or a downer, or someone who was always complaining. She also said she lacked the personal strength to be confident enough in her own narrative, so if someone said to her, ‘Don’t the doctors think you should be cured by now?’ she said she didn’t have the assurance to say, ‘Yes, they do, but I feel differently.’ The experience of sharing her story with a community that understood her was “incredibly cathartic.”

She said she hopes that Lyme disease patients who read her book will realize there are those out there that get where they are coming from, and that reading “Suffering the Silence” might inspire them to seek out a community of support. (Along with her book, Cashel has started http://sufferingthesilence.com, an online community for people living with chronic illnesses.)

For people whose lives or those of a close friend or family member have not been impacted by Lyme, she doesn’t want to scare people, but said she hopes “to raise the level of awareness of Lyme and the knowledge that Lyme can go on.”

In addition, she said she hopes it will make readers take tick-borne diseases seriously by being vigilant about tick checks and by speaking with their doctors with any concerns.

“We need to be better advocates for ourselves and our bodies,” Cashel said. “When something feels wrong, we know. We can feel that. It’s important to stay in tune with ourselves and speak up.”

A voice for people in need

“I am very optimistic about the future,” said Cashel, who lives in New York City and works full time for a social action service. “I’m seeing empathy I never expected. That’s been wonderful. People are more open to hearing about persistent Lyme, and the more people who speak up and learn about it, the better off we are all going to be.”

Though living with Lyme disease has been a struggle, Cashel said there’s a benefit to what she’s been through.

“The experience of feeling that I didn’t have a voice has helped me understand people who have that in other societal ways, who feel ignored and dismissed,” she said. “I feel a certain empathy for people not being understood and accepted. I’d like to keep working to help people speak out about whatever they need to speak out about.”

Andrea Pyros is a freelance writer. Contact her at myvalley@poughkeepsiejournal.com

If you go

What: Author Allie Cashel will speak about “Suffering the Silence: Chronic Lyme Disease in an Age of Denial”

When: 7:30 p.m., Sept. 28

Where: Bard College, Weiss Cinema in the Bertelsmann Campus Center, Campus Road, Annandale

Admission: Free; no tickets or reservations required.

Information: Call 845-758-7054; email mmorriss@bard.edu. Copies of “Suffering the Silence” will be available for sale and signing from Oblong Books & Music; visit http://www.oblongbooks.com/event/reading-allie-cashel-suffering-silence-bard; also visit http://sufferingthesilence.com

On the Web

For more information and to watch videos on Lyme Disease, visit www.poughkeepsiejournal.com/lyme