Did you know that there are 300,000 cases of Lyme disease every year in the US? And did you know that some of these cases become chronic?
In her book Suffering the Silence, Allie Cashel writes about her experience with chronic Lyme disease, starting in childhood. Unrecognized by much of the medical mainstream, people with chronic Lyme deal with debilitating chronic pain, neurological, and cognitive symptoms. The book includes a great deal of information about Lyme disease, as well as several stories from people who have suffered with chronic Lyme, and the doctors who treat it. This is a fantastic resource to learn more about a little-known disease, and get the opportunity to become involved in raising awareness and supporting a growing community of people living with chronic Lyme, and other invisible conditions.
Last week, I spoke to Allie about the book, and the Suffering the Silence community.
It’s all in your head
“That idea that there was no interest in hearing what I was going through was really difficult for me.” After initially being treated by a supportive doctor who diagnosed her with chronic Lyme, Allie was referred to specialists in Boston in the belief that they would be better able to help her. They weren’t. Instead, they diagnosed her with a psychological breakdown, and the cause of her physical symptoms as psychosomatic.
Losing the antibiotic treatment that had so far been keeping her on a relatively even keel, Allie deteriorated significantly. That period in her life was quite traumatizing, and gradually she started coming to terms with the fact that “maybe these incredibly powerful doctors didn’t have it right.” She is still saddened by not having had enough confidence to speak up for herself at the time. “It was only in hindsight that I had that strength. I wish that had I had that in the moment, so I might’ve been able to speak up sooner. It would’ve shortened that time of intense illness for me.”
Thankfully, Allie eventually went back to her previous physician and got treatment that brought the Lyme disease under control. She is now 25 years old, and doing much better, although “I still deal with a lot of exhaustion and joint pain.” She lives with her boyfriend Calvin in Queens, New York. “He helps me check myself, helps me see red flags when I might be faltering a little. I’m incredibly grateful for his role in my life,“ she said. After college, Allie started working for as start-up that does advocacy work for nonprofit organizations.
Suffering and secrets
“I liked the idea of writing something that was real and affecting people,” Allie says of her decision to write about chronic Lyme for her senior thesis in creative writing. in speaking to others with persistent Lyme, “my eyes opened to this world of suffering and disbelief and hardships that were even more potent and bigger than I’d avenge it from my own experience.”
As Allie reached out to other patients, as well as the doctors who treated them, she found that “there were a lot of concerns about identities being revealed.” Individuals worried about “how they might be viewed at work or from their friends. “That happens a lot in the chronic illness world, there is a lack of understanding what it truly means to be suffering from this,” she explained. It was also important to protect the identity of the physicians she interviewed. “Patients were concerned it would put them on the review for the treatment of Lyme,” Allie said. She explained that insurance compan
ies will target doctors who treat Lyme disease past the guidelines recommended by the Infectious Diseases Society of America (IDSA)
Dialogue and healing
Allie intended Suffering the Silence to be a conversation starter “so those who felt misunderstood could use it as a way to open that dialogue.” To her surprise, it did that for her family, as well. “It has been an incredible tool for [my family] to heal ourselves and talk about things that we were never really able to talk about before,” Allie said. “It helped me realize that it wasn’t only me who struggled at that time. Illness affects every single person in a family.”
Creating a community
As Allie was writing the book, she discussed it with her friend Erica, was diagnosed with lupus in high school. “We realized how many amazing parallels that were in terms of our experience and many of the feelings we had, especially as adolescents growing up in dealing with acute and chronic illness,” Allie said. They wanted to make a difference in a positive way and created the website community Suffering the Silence.
“We wanted to create a safe place where anyone who is dealing with a chronic illness can share their stories and meet other people who might be able to empathize with them.” Most of the individuals who have been writing on the website have been young women. Allie believes that the reason for this is that “young women often feel dismissed in terms of their diagnosis. Having the support and empathy about what it feels to grow up as a young woman with this disease can be really powerful and helpful for people.”
What’s next for Lyme and Allie
Allie feels hopeful about the changes happening in the Lyme disease field. Several states have passed legislation that protects physicians from medical review for treating past IDSA recommended Lyme guidelines. As well, “The National Clearinghouse for Treatment Guidelines removed IDSA guidelines, leaving just the International Lyme and Associated Diseases treatment guidelines, which acknowledges the persistence of the bacterium in the system and how complicated they can get when co-infections are introduced into the conversation.” As well, the CDC has recently amended its statistics regarding the incidence of Lyme in the US, changing the annual number of cases from 30,000 to 300,000. “Awareness is definitely on the rise,” Allie said.
On a personal level, Allie is recovering from writing the book and doing a book tour. “It definitely took a lot out of me,” she said. She is committed to continuing the work with the Suffering the Silence community. “I needed to expose it to people, to help people with Lyme so they don’t have to go through what I went through.”
I_f you want to share your story with Suffering the Silence, get a photo of yourself with your diagnosis written on your arm, and share it on social media with the hashtag #SufferingtheSillence. Allie and Erica will make sure to share it. If you want to share a longer form of your story with them, contact the Suffering the Silence team._
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Lene writes the award-winning blog The Seated View. She’s the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.