Suffering the Silence: Chronic Lyme Disease in an Age of Denial
I don't write about illness often, despite having grown up with one. But in celebration of the book Suffering the Silence: Chronic Lyme Disease in an Age of Denial and of Allie and Erica's advocacy work with bringing the suffering of those with chronic illness to light, I've decided to share a bit. For more, head to their website, buy the book, or find them on tour.
I don’t think I ever fully woke up the morning of Allie Cashel’s book launch for Suffering the Silence: Chronic Lyme Disease in an Age of Denial.
By 10am my happy little dog was ready to get up and go, but my body wasn’t. A walk, iced green tea, breakfast, and a few hours of work later, and I still felt in a funk. Joint pain crept in. I battled it with twenty minutes of gentle yoga, and for a short while I felt my body opening up and breathing deeply. But then it closed quickly again, worsening from the exertion, blowing into severe pain and threatening to go into full crash mode.
By the time I’d made it down to the party, I was depleted, vulnerable, and in worsening pain. I stayed all of twelve minutes; long enough to congratulate Allie and her publicist Erica’s achievements, buy a few copies of the book, and wish them well on their book tour, before sneaking away without saying goodbye.
I wandered the Lower East Side, lonely in my pain and anxiety, feeling inadequate in not being able to stay longer at a celebration I’d anticipated for months. I was angry with myself for not being able to filter out the loud hum of the celebratory voices filling the gallery space, which felt like lightning in my brain and on my skin. I was frustrated that I couldn’t just will myself into being bright and bubbly and social, as I truly wanted to be.
I spent the entire weekend in bed, resting and trying to restore. This happens, sometimes. Because I’ve dealt with Lyme disease - with its co-infections and mysteriously endless, wavering symptoms - for over twenty years.
Allie and Erica are two women who would understand my predicament that celebratory evening completely. Both have experienced many painful symptoms from Lyme and Lupus, respectively, but still dedicate themselves to accomplishing as much as they can in the bodies they’re in. Their advocacy work is a huge testament to how suffering alone leads people to seek out community, and a way to articulate a shared experience that often feels indescribable.
Suffering the Silence brings to light the stark reality that many who contract Lyme disease are never really freed from it after the 4-6 week course of antibiotics as recommended by the Infectious Disease Society of America. Lyme is a controversial disease, with around 300 documented symptoms that often mimic other diseases. Blood tests are not reliable – false negatives and false positives abound, meaning doctors really need to be in tune with a patients activities and symptoms in order to render a diagnosis in either direction. “Lyme-literate” doctors – those who recommend further sessions of antibiotics or believe that their patients can still be infected after the CDC’s guidelines have been met - are often vilified by other doctors, pharmacists and insurance companies. And then there’s the mental illness component: there is often a conclusion that those long-term symptoms are mental rather than the result of an aggressive spirochete.
It’s a disease that mystifies in its complexity and politics. Which is why Suffering the Silence is a powerful new tool for those in the middle of the war.
One huge triumph of the book lies simply in its basic educational value for those curious about what Lyme disease is. It lays out the numbers, the contrasting research, the criticism, and the void. And those numbers lead to some scary conclusions. Over 300,000 people in the United States alone get diagnosed with Lyme disease each year; 45,000-60,000 of them will retain symptoms after their treatment is through. 50% of doctors believe that chronic Lyme disease does not exist, translating into more patients not being believed that their bodies still hurt after treatment. Symptoms run the gamut: some suffer joint and muscle pain, others severe memory and communication loss. Many are fully immobilized and leave schools and jobs for extended periods of time, if not completely.
Allie tracks the disease's history, its patterns, and the source of the controversy. It's a fortifying read for those who have Lyme, and a smart tool for those who know someone who does and want to understand the disease more. And, thankfully, it's presented in a way that is clear and informative, but also engaging and humane. Despite the tear-wrenching content, it's an easy read.
I first got diagnosed with Lyme disease in 1993. I’ve had three extreme periods of illness in my life because of it. As a child, I was in a wheelchair, unable to walk on my painful legs and feet. In college it hit more neurologically: I would black out in class, had massive panic attacks, suffered through migraines, developed back and neck pain that’s never gone away, and would vomit food up whole. 7 years later as an adult in New York City, I was out of work for over a year, relatively homebound from unending, torturous pain and fatigue, my weight dropping to around 105 pounds.
The first two returns to “health” took massive amounts of intravenous or directly injected antibiotics. All three required thousands of vitamins (orally or by intravenous), supplements and distilled herbs; a strict diet; meditation and yoga; limiting environmental stimulation and stress; and patience. A lot of patience. Periods of “health” require much of the same discipline so that I don’t slip into anything that will threaten my immune system and bring more severe symptoms back.
The past few years, I’ve been in a middling place. Right now I can hold down a freelance writing schedule (so that I can work from home at my own pace), host a weekly radio show, take care of myself without assistance, and have hope for greater health in the future. Sometimes I feel and act relatively healthy; other times my body is just done. I feel various kinds of pain every single day, and my choices are all about minimizing that. New symptoms (an ankle that’s been severely swollen for three months, fingers that are starting to curl in pain, hands that feel on fire when I close my water bottle) have a rheumatologist insisting that it’s not Lyme; I’m getting tested for Lupus, Celiac, and Rheumatoid Arthritis. While of course I don’t want to have Lyme, it's a world I understand, and one I have very much grown up in. I don’t suspect that I have another chronic illness on top of it – what would be the odds, right? – and sometimes I lose faith that there will ever be a clear word or diagnosis for what I feel.
Mine is a weird, messy story, one not too dissimilar from others who have experienced a Lyme infection over a long period of time. It does not completely define who I am, but that has very much been a factor in how I see the world. In some ways, I'm thankful for it. It's taught me humility, patience, gratitude, and empathy. I'm a stronger person because of it. It's not the most interesting or alluring part of me (as I expressed on my radio show yesterday when talking about baggage and vulnerability), and it's not something I am ashamed of or hide intentionally. But it's not something I've figured out how to speak about fully, either. Yet.
This is where the second great accomplishment of Suffering the Silence comes in. Allie has brought together similarly personal, intimate stories from Lyme patients all over the United States and as far as Japan and Australia who had been afraid to share their stories beforehand.
Many express having a hard time talking to friends and loved ones about their condition, afraid of whining or depressing others, though their physical challenges are nothing to take lightly. Yet they open up to Allie, vulnerably and sometimes begrudgingly, because she asks them to. She asks them what their lives are like, and what their bodies feel like. She asks about their experience with doctors and insurance companies. She asks how much they have lost.
All whom she interview confess to doubting their own symptoms and sanity. They are periodically angry that they can’t just will themselves to be better, as I had wished I could the day of that book launch. They're angry that there's no straight path to regaining health set out for them from their medical team. They question their mental health when a member of the medical community or someone close to them diagnoses the source of their pain as mental, rather than physical. When I first fell ill my pediatrician – who was never able to find a diagnosis – told my parents that I was faking not being able to walk. I was looking for attention, and they should take me to a psychologist to find out the mental or emotional root of my "faking it". I was only 11 years old.
People with Lyme disease are not "doing this to themselves". They mourn their former, healthier selves; bodies which were once runners and soccer players and full-time employees. They travel hours to see the top doctors in the field. They go on severely restrictive diets. They try multiple forms of physical therapy or restorative exercise. They experiment with every possible supplement or herb out there. Sick people will do anything to feel better.
Allie has created a community through these stories. Reading about others with similar webs of symptoms, diagnoses, accusations, doubts, fears, and triumphs is comforting and empowering. By continuing this through the online community at Suffering the Silence, she's allowing more stories to be shared, and more comfort to be offered.
The final victory in Suffering the Silence is how it challenges those in the medical, political and social fields to manifest change. Similarly to the AIDS virus, there has not nearly been enough money thrown into research about Lyme. The guidelines doctors use as sources are outdated compared with new studies and science. Those who are "in the know" are often vilified rather than supported. Allie challenges those guidelines and protocols to be updated and clarified. She clearly points out the discrepancy between what people are told and what newer studies show to be true. She challenges politicians to support measures that make it illegal for insurance companies to deny medical coverage for those suffering from long-term Lyme. She challenges those with Lyme to not be afraid to speak up or out.
Suffering the Silence is a call to arms. It’s a call to action. It challenges that there’s no reason for hundreds of thousands of people to be suffering when something can be done to give them their lives back. And because of Allie Cashel's emotional and physical bravery, the commitment she made to researching and interviewing and showing all sides of the story, and the empathetic ways she continues to bring those who have suffered in isolation into the light, we're all one step closer to finishing that fight.
