Description: I talked to Allie Cashel, author and co-founder of Suffering the Silence about her book, the current state of the complicated issues related to Lyme Disease, writing, certainty, and the stress of living with Lyme Disease and all its baggage. In the previous episode, I talked to her Suffering the Silence co-founder, Erica Lupinacci, about her health advocacy, media portrayal of chronic illness and disability, challenges she’ll face as an actor with a disability, and doing everything right and still being sick.
Hey there and welcome to In Sickness + In Health, a podcast about the intersections with chronic illness, disability, healthcare, and mortality. My name is Cara Gael; I’m not a doctor or medical professional, I’m just a person and a patient who really wants to talk about this stuff more.
Nothing said on this show should be considered medical advice. If you’re experiencing a medical issue, please seek qualified medical help. I know the system sucks, but I wish you a lot of luck. Every person is different, even within disease groups, so none of my guests should be regarded as official representatives or spokespersons for their conditions. Please respect their very personal choices, and unless they ask for it, please don’t make suggestions about treatments or lifestyle changes. Unsolicited medical advice is never not annoying.
In today’s episode, I talk to Allie Cashel, author and co-founder of Suffering the Silence. We talk about her book, the current state of the complicated issues related to Lyme Disease, writing, certainty, and the stress of living with Lyme Disease and all its baggage.
If you missed last week’s episode, I talked to Suffering the Silence co-founder, Erica Lupinacci, about her health advocacy, media portrayal of chronic illness and disability, challenges she’ll face as an actor with a disability, doing everything right and still being sick, and traveling with an unpredictable body.
Allie and Erica started their online community and photo project to connect with other people experiencing chronic illness after realizing that as best friends they weren’t even talking to each other about their illnesses.
The book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, grew out of Allie’s undergraduate thesis. She decided to interview others whose lives had been effected by Lyme disease, and found that she was not alone in the terrifying and confusing experience she’d had in trying to get treatments for the symptoms she’d experienced.
The book includes a forward by Dr. Bernard Raxlen, who has treated Allie and members of her family for the disease. She opens the book with a brief description of Lyme and why it’s become so controversial in a section titled “The Aches and pains of daily living."
Allie writes: “Lyme disease afflicts millions of people worldwide. It is transmitted via the bacterium Borrelia burgdorferi, transferred to humans and other mammals through the bites of infected blacklegged ticks. The “standard” symptoms of Lyme disease include headache, fever, joint stiffness, and the infamous bull’s-eye rash. For 80 to 90 percent of infected individuals, the disease is manageable, sufficiently treated by the two to six weeks of antibiotic therapy recommended by both the Infectious Disease Society of America and the Centers for Disease Control. But 10 to 20 percent of those afflicted experience a significantly more debilitating litany of symptoms, for an often extended period of time. In these cases, the treatment covered by health insurance is insufficient. Though crippling symptoms persist, the doctors who cannot or choose not to diagnose their condition often explain away unnerving persistent symptoms as the “aches and pains of daily living.” This dismissive approach can leave those suffering without an advocate—at the 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.”
From this gap in our knowledge, the clash of ideas between Chronic Lyme disease, post-treatment Lyme syndrome and medically unexplained symptoms spring forth. The question of whether or not Chronic Lyme exists has become one which is highly contentious for a number of reasons.
Allie continues, “The debate over the existence of chronic Lyme disease adds a layer of hardship to what is already a painful, confusing experience—the psychological effect of living with a disease many do not speak of, and that some don’t even believe in, can at times equal its physical weight. Much of this debate concerns the lack of ongoing research, which limits both the quality and quantity of information available to doctors and patients.
…In preparation for a June 2012 special on Lyme disease, the producers of WBUR, Boston’s NPR news station, sought out many doctors to speak on the topic. In the end only three agreed to speak, two of them only anonymously; many other doctors never returned repeated phone calls. One doctor who declined cited the environment as “simply to volatile for him to state his opinion." Kathleen McNerney, the producer of Morning Edition, told CommonHealth.WBUR.org she “could not think of a another medical field where it is more difficult to find a doctor to speak on the record.”22
Doctors who ally themselves with the chronic Lyme population fear media appearances because such can make them targets of both medical disciplinary review boards and the insurance industry. Insurance companies work strenuously to revoke the medical licenses of doctors reputed as treating chronic Lyme—“Lyme-literate doctors,” often called LLMDs—by asking their patients to file malpractice suits against them.23 In another approach, insurance companies scour medical records for small inconsistencies in note-taking or record-keeping, bringing doctors to court on charges apparently separate from their Lyme treatments.24” Though some states have passed laws to prohibit this, insurance companies regularly drop patients whose treatment exceeds the IDSA recommendations.25...The lack of dialogue about chronic Lyme perpetuates the belief that Lyme disease does not pose a significant risk to the population. And because so few write or speak about the disease, patients are often disinclined to speak about it themselves. As such, the conversation ends before it begins”
Lyme disease is complicated for all of these reasons, some things we’ll be talking about more in this episode, more that Allie wrote about in the book, and even more reasons still. The things we talk about when we talk about Lyme Disease are more places where the silos in our healthcare system play out in ugly ways, that only serve to harm patients and get us nowhere.
As with many chronic conditions, every Lyme Disease story is different. Some are more straight forward than others, most often when the disease is caught early and treated right away. Others are more complicated. Both Allie and I have Lyme Disease stories that are a lot more complicated than our medical system has the framework to deal with it.
In 2008 Allie’s story and my own converge in the vortex of Lyme Disease. At that point, she was eight years into dealing with it, now facing her first huge symptom flare which brought with it a bunch of scary new neurological symptoms.
For me, I was treated for Lyme Disease in 2008 after being sick for at least five months. I have since been dealing with long term symptoms that have been complicated by the underlying genetic condition I did not know I had until 6 years after my run in with Lyme Disease. But that run-in gave me a crash course in the neuropathic pain I’ve experienced every day to varying degrees since, and acted like gasoline on the fire of preexisting heart and neck problems, and increased chronic fatigue. It’s been suggested to me that I might still have Lyme disease, while I’ve been assured by others that I do not. Because the testing isn’t particularly helpful, and the total lack of knowledge around Lyme, my other medical conditions, and my genome, I may never know exactly what’s transpired. And I think I have accepted that? I dunno, grief is weird, check back with me in a month, I may feel totally different.
In episode 24 of the podcast, Chelsea talked about her own confusion around her recent Lyme diagnosis, and I discuss my own experience with it more. I also talked about it, probably most in depth, on my episode of the Lyme Voice podcast.
On the episode page, I’ll have links to these episodes, more about Lyme Disease and the confusion surrounding it, and links to the Suffering the Silence photo project Allie produced with last week’s guest Erica, their online community, and the book, which I have to say I really loved. Allie did an amazing job of juggling the aspects of memoir, patient testimonials, and current state of affairs in a very balanced and human way. You do not need to have or treat Lyme Disease to connect with the book, but if it’s something you’ve had experience with, it is particularly infuriating, complicated, and comforting. I found much of it spoke directly to so many of the issues we talk about on this podcast, and is highly relevant to so many of the conversations we have about healthcare, trauma, and the experience of connecting with others who have had to suffer the same silence of stigmatization and illness.
On the episode page, I will also link to episode 21 with Heather, where we talk about post traumatic stress symptoms resulting from our experiences with chronic illness, which is something Allie writes about in the book, and we touch on a bit in this episode.
The world is and terrible and terrifying, and so is Lyme Disease. BUT at least there are things you can do to better protect yourself from contracting it. Like most diseases, the best outcomes come from prevention and early detection and treatment.
The ticks that carry Lyme Disease are found most often in the Northeast and Midwestern US, but as the climate changes, their reach is spreading. These things are about the size of a poppy seed, which is pretty ridiculous.
Check yourself before you wreck yourself: after being outside, check yourself for ticks; don’t forget your hairline and crotch, and have someone check your back if you can. They also recommend you not walk around barefoot, but loose toes in the grass is one of the best feelings in the world, so I can’t really get behind that one. If you do go hiking or something though, wear high socks, if not pants, and USE BUG SPRAY that actually works on ticks. If nothing else, at least spray your hiking boots. If you can, throw your clothes in the wash as soon as you get home and take a hot shower. Don’t forget to check your kids and pets for ticks as well, you know how they like to roll in things.
And if you do find a tick, get rid of it as soon as possible and then pay attention. If you find yourself getting sick with an unexpected fever, weird rash, and of course the classic bullseye rash, get yourself to a doctor as soon as possible.
Like Allie and I talk about in this episode, it’s not always as simple as that, but we hope that with better physician education and research, it can at least be simpler.
Not all ticks carry Lyme, and the actual disease transmission happens only after the tick has been attached for a while, so it’s good to get to them as soon as possible. Lyme Disease is also not the only disease transmitted by these buggers, as Allie talks about a bit in this episode, so it’s a good idea to try not to pick one up at all if you can avoid it.
There will be plenty of links to learn more about all of this on the show page. As always, find resources and more from us at insicknesspod.com, and on social media @insicknesspod. Find the Suffering the Silence online community at sufferingthesilence.com, on Instagram and Facebook as sufferingthesilence, on Twitter @ststogether, and get the book where books are sold.
And I hope you enjoy this episode…
Thanks for listening to this episode of In Sickness + In Health. There are plenty of links to learn more about the stuff we talk about in this episode on the show page. As always, find resources and more from us at insicknesspod.com, and on social media @insicknesspod. Find the Suffering the Silence online community at sufferingthesilence.com, on Instagram and Facebook as sufferingthesilence, on Twitter @ststogether, and get the book where books are sold.
I had the pleasure of recording a podcast with a couple of friends from college this week. They’re currently working on a show called Keanu Club, where they are watching every Keanu Reeves movie chronologically and producing a podcast episode for each one. Prior to this they watched every Nicholas Cage movie for a podcast called Cage Club. My episode won’t be out until the 22, but it gave me a chance to re-watch Bill and Ted’s Excellent Adventure, which is one of my favorite movies of all time—but Bill and Ted’s Bogus Journey is higher on my personal favorite list.
Anyway, the reason I’m talking to you about this here is because the sweet lightness of Bill and Ted, and their message of “Be excellent to each other and party on, dudes,” was exactly what I needed this week full of so much sadness and anger. I woke Sunday to news of what had happened in Orlando and was crushed by the news. I can’t really summon much more to say because I have so many feelings about the whole thing, I’m really not done processing the information yet. But it’s something that hits close to home and the people I love, while at the same time adding to the growing fear that I carry that we are not safe, even in our sacred spaces.
So today, more than ever, please don’t forget to be excellent to yourselves and each other. And party on, dudes, ladies, and non binary folks.