Meet Allie Cashel and Erica Lupinacci, the Founders of Suffering The Silence - A Chronic Illness Community
We first discovered Suffering the Silence, an online community for people living with chronic illnesses, back in August when it was featured in Refinery29. The women behind Suffering the Silence are Allie Cashel and Erica Lupinacci, middle school friends who suffered from their own chronic illnesses and wanted to help others break the silence and stigma surrounding invisible and chronic illnesses.
Allie's debut book of the same name, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, details her experience with chronic Lyme and features stories of other chronic Lyme patients from around the world and their struggle for recognition and treatment.
We were thrilled to have the opportunity to do a Q&A with Allie and Erica.
This interview was conducted by Jessie of Soulmade Goods, one of our favorite makers/creators who was diagnosed with Postural Orthostatic Tachycardia Syndrome (POTS), a form of Dysautonomia, a chronic condition that is rarely heard of and often misdiagnosed.
Jessie: When were you first diagnosed with your chronic illness?
ALLIE CASHEL: I was first diagnosed with Lyme disease when I was seven years old in 1998. I had a very classic presentation of the disease. I remember my tick bite. I had the classic Bull's Eye rash and was treated right away. It wasn't until I started to go through adolescence that I noticed any recurring and persistent symptoms of the disease. By the time I was 14 I had been diagnosed again with Lyme, and also with Babeseosis, Bartonella, and Ehrlichiosis, three other tick-borne infections.
ERICA LUPINACCI: I was diagnosed with lupus at 18 after being hospitalized with severe amounts of fluid surrounding my heart and lungs. I started experiencing symptoms of joint pain and fatigue at 15 and went through about a year and a half of testing before I was misdiagnosed with fibromyalgia and ankylosing spondylitis. I then started experiencing reoccurring “back spasms” which led to the inability to breathe when lying down and my rheumatologist realized that it was a heart issue. I was diagnosed after a week in the hospital when they realized that this was a lupus flare up.
Jessie: What is it and how does someone get it?
AC (on Lyme): Borrelia burgdorferi is a spirochete bacterium that infects mammals with what we call Lyme disease. The bacteria is transmitted through the bite of a blacklegged tick. If the tick is mature and infected with Borrelia burgdorferi, it transmits the bacterium as it feeds. If the tick carries any other bacteria, often called co-infections, those bacteria get transmitted in the same bite. Unfortunately, most other aspects of the disease are remarkably divisive.
EL (on lupus): Lupus is an autoimmune disorder that can affect various parts of your body like your skin, joints, and organs. When you have lupus, your body is unable to differentiate between foreign invaders and your own healthy tissue and ends up attacking and destroying that healthy tissue. The medical world has not been able to come to a conclusion on the definitive cause of lupus but believe that it develops in response to a combination of factors including hormones, genetics, and environment.
Jessie: What kind of symptoms can an individual expect?
AC (on Lyme): In early stages of the infection, many people experience fatigue, achiness, joint pain, fever, and chills. For about 20% of people infected, these symptoms can persist and can even develop into more debilitating symptoms. Muscle pain, weakness, numbness, extreme headaches and neurological dysfunction all can all accompany the more advanced stages of this disease. That being said, no case presents itself exactly like another, which can be one of the reasons why this disease can be so hard to diagnose and treat.
EL (on lupus): Because lupus can affect all areas of your body, symptoms can really vary from person to person. The most common are extreme fatigue, painful or swollen joints, fever, headaches, hair loss, chest pain, and the infamous malar rash, a butterfly shaped rash across the nose and cheeks. Lupus is a disease of flares so your symptoms may come and go and worsen at different times.
Jessie: Why is it considered an invisible illness?
AC (on Lyme): Lyme is considered an invisible illness because many people who are dealing with Lyme have no obvious visual marker that would signify they are not feeling well or are disabled in some way. We often hear things like "well you look fine!" and need to speak up in order to let people know we are struggling.
EL (on lupus): Lupus is considered an invisible illness because aside from a few symptoms that do affect your appearance, most of the time the person looks “normal” or healthy. You can’t tell just by looking at them that they may be in extreme pain. This can be very frustrating because the people around you often have trouble believing you are sick or understanding the severity of the disease.
Jessie: Allie, how does chronic Lyme disease differ from Lyme Disease?
AC: Chronic Lyme disease refers to the presence of symptoms that persist past the traditional course of antibiotic treatment recommended by the IDSA and CDC. Patients suffering from chronic Lyme disease deal with debilitating symptoms for months, sometimes years at a time.
Jessie: Allie, what kind of struggles do chronic Lyme patients face since the illness is not recognized by all of the medical community?
AC: Patients who deal with chronic Lyme disease are thrust into an incredibly political medical landscape. Because the conversation has become so polarized finding doctors, sifting through internet information, and acquiring insurance coverage for treatment all become struggles for chronic Lyme patients. We also have to deal with the stigma that is associated with our diagnosis. Doctors, and sometimes even family and friends, often dismiss patients with chronic Lyme as over dramatic, neurotic, even hysterical. These patients aren't only dealing with some of the most physically debilitating symptoms of their lives, they also have to face dismissal and stigma from the medical world.
Jessie: Allie, what could we do to help? How can we get others to recognize chronic Lyme as an actual condition?
AC: If someone you know is affected by this disease, work to try and understand what they are going through before passing judgement. Ask questions, be supportive however you can. I like to believe that changing the way individual interactions take place can ultimately change the way people are treated on a bigger scale.
There is also some legislation currently coming through the senate that will be extremely important in the Lyme world. Senate bill S.1503, will provide help for the over 300,000 victims of Lyme and other tick-borne diseases (TBD) each year and promotes research to prevent infection from reaching others. If you'd like to take a stand and support this legislation, please write to your local senator to express your support.
Jessie: Allie, your book contains stories from multiple chronic Lyme patients around the world. How has talking to other chronic Lyme patients and forming a community helped you?
C: It's been incredibly cathartic to find such support and community. hen I was growing up with Lyme, I really didn't know very many people who understood what I was going through. Once I started talking to other people who shared my experience, I felt inspired to share my own Lyme story.
Jessie: Allie, what is your ultimate goal with this book?
C: More than anything else, this book s an awareness project. I want to bring a new level of empathy and understanding to the patient experience of this disease.
Jessie: Final question, what does "diversability" mean to you?
AC: To me, diversability means taking a little bit of extra time to understand the aspects of life that make us unique. Sometimes our biggest challenges become our best stories. When disability, illness, or difference isn't dismissed offhand, it can be explored, understood, and even celebrated. I think there is real power [in] our unique stories and when we do our best to understand how we are different from others, we can start to find our own unique and powerful strengths.
EL: We all have varying abilities and things that make us different yet so many times people feel misunderstood, dismissed, and silenced because of their differences. We need to find a way to embrace and celebrate these differences and help other people understand what it’s like to live with them. I’ve realized that though they can make life a bit more difficult, my differences have made me a stronger and better person and have started to let them empower me.