What It's Really Like To Suffer From An "Invisible" Chronic Illness

Not all thesis projects turn into book deals, but not all thesis projects resonate with thousands of people. Allie Cashel's has. The now-24-year-old was a senior studying creative writing at Bard College when, in need of a personal experience to serve as the subject of her senior writing project, she decided that she was ready to speak out about her struggle with chronic Lyme disease, which she has suffered since she was seven years old.

"Lyme disease was something that I had been affected by for years, but had always really struggled to talk about, in many ways because I was scared to enter this controversial conversation that surrounds my diagnosis and my disease," Cashel tells us. "The way that I started the project was by finding other people who shared my diagnosis to speak to about their own experiences."

Cashel's project evolved into her first book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, out September 8. In turn, the book has evolved into a website and a growing community of chronic illness sufferers, which Cashel is building with longtime friend and lupus sufferer Erica Lupinacci. "The first time that I ever sat down and wrote about my experience with lupus was for the site," Lupinacci says. "Once I shared that and people read and understood some of the truth of what I was going through, it opened up so many conversations with my loved ones."

Now, Cashel and Lupinacci seek to provide the same platform to others with chronic illness, from endometriosis to hemophilia to asthma. Their site features an ongoing series of portraits of chronic illness sufferers with the names of their conditions written on their arms and their hands over their mouths, symbolizing the silence that many with "invisible" illnesses — illnesses that aren't discernible by looking at someone — feel compelled to maintain.

"That’s been a fear for most of my life, that people won’t believe it or that people will think that I’m crazy or exaggerating or looking for attention," Cashel explains, "and there’s definitely a possibility as I continue to share these stories that there will be people who think that — but more importantly, I think for the people who know what it’s like to live with this, I know that they won’t think that."

Lupinacci adds that doubt and stigma even surround diagnoses that aren't controversial in the medical community. Lupus, for example. "With all of these diseases that are invisible — people look at us and we look totally fine — is that element [of] people thinking you’re being dramatic, or you are making it up," she shares. "Even with your doctor sometimes, I’ve had many situations where I’ve gone to the doctor and I’ve said 'I feel like I’m having a flare-up' and [they've said] 'Go take Advil, you’re fine' — and then eventually, I have a major flare-up."

Even worse, this reluctance to believe sufferers is influenced by gender. Cashel gives the example of how women under 55 are two times as likely as men in the same age group to die after being hospitalized for a heart attack — in part because they are reluctant to speak up about symptoms for fear of seeming like hypochondriacs and in part because doctors often ignore or minimize women's complaints when they do speak up.

"If a male comes in and explains the same symptoms, they’ll give him immediate attention," Cashel sighs. "And I think that’s a bigger social issue we have to talk about, that women are often dismissed as hysterical, dramatic, or crazy."

Cashel and Lupinacci, who will embark on a book tour in the U.S. and U.K. in September, hope to continue to amplify the voices of people who have hidden their pain for too long. Cashel explains that she and Lupinacci seek to provide opportunities to "not [put] a brave face on, and not [put] a smile on for a second, and to give people a look into what your life is really like and what the pain is like."

It's not about negativity, but honesty. Click through for 11 portraits of chronic illness sufferers and read their testimonies of how they really feel when they look "fine."

Photo: Courtesy of Amanda Crommett Photography.
Erica, Systemic Lupus Erythematosus
"Every day, I’m trying to learn how to love a body I can’t control. The unpredictability can be the most painful aspect of this disease. I get scared that my body will keep me from living the life I envision, but I’ve also decided I won’t let that fear hold me back. I’m incredibly passionate about my life and am dedicated to making my very big dreams come true. Fighting Lupus has helped me truly understand the extraordinary power of believing in yourself."
Photo: Courtesy of Amanda Crommett Photography.
Patrick, Hemophilia
"90% of people with hemophilia contracted HIV and/or hepatitis-C in the late '80s and early '90s because of the blood contamination crisis. That is one of the most unfortunate events in American health history. On the converse, today we have the medicine to live very normal lives. I’m a part of the first fully healthy generation of people with hemophilia. And yet, 80% of the world still doesn’t have access to the medicine or care that we do, [which] allows someone like me to live to see beyond the age of 3 or 4. The history is dark and the people who lived through it still feel the effects of that. It’s a very conflicted community. It’s strange to look and feel normal but be a part of something that is very specifically complicated."
Photo: Courtesy of Amanda Crommett Photography.
Vivian, Scoliosis
"My family and friends sometimes forget that I have it, they’ll forget that I wake up every morning with my back hurting. It doesn’t register in their heads. It’s not their fault, I dont complain constantly about it so its easier to forget I have it. I also work as a waitress, so a lot of times, I’m viewed as weak because I choose not to carry heavy trays. I physically can’t and I have to remind people. I think in their heads, they think I’m lazy or making it up. If I could choose to be stronger, I would love to be stronger."
Photo: Courtesy of Amanda Crommett Photography.
Christian, Type 2 Diabetes
"It’s not only important to educate yourself, you have to educate your significant other, your friends, and your family. Sharing with my friends and my family...has really helped me along in my journey to be accountable not only for myself, but everyone around me."
Photo: Courtesy of Amanda Crommett Photography.
Reisha, Asthma
"Something simple like breathing is a hard thing for people living with asthma. So if your goal is 'Today, I want to breathe,' that is a big feat because even walking down the stairs, the subways in New York, the pollen, smog, everything gets in the way of breathing. I heard this quote before that said 'A life as an asthmatic is like a fish with no water' and it’s very, very true."
Photo: Courtesy of Amanda Crommett Photography.
Ty, HIV+
"There is such a stigma around HIV, people automatically [discount] you and don’t think that you can do anything else. Just because I have something like this doesn’t mean that I still can’t go out and sing and do the things that I am meant to do. It doesn’t mean that I can’t date, that I can’t love, it doesn’t mean that I can’t do any of those things. I’m still a person, I’m still human."
Photo: Courtesy of Amanda Crommett Photography.
Allie, Chronic Lyme Disease
"For a long time, I was terrified to tell people about my illness experience because I was scared they wouldn’t believe me. I needed to become an advocate for myself, especially in conversations about my controversial diagnosis. I had doctors tell me I was having a mental breakdown and needed to find the strength to tell them otherwise. It hasn’t been easy, but finding my voice and sharing my story has been an incredibly powerful tool in my healing process."
Photo: Courtesy of Amanda Crommett Photography.
Evan, Crohn’s Disease
"Since developing Crohn’s Disease, I’ve had to scale back a few goals of mine. For example, I can’t join the military and I can’t tour as a musician because I can’t get a cold place to store my medicine. It’s a humbling experience."
Photo: Courtesy of Amanda Crommett Photography.
Chiara, Rheumatoid Arthritis, Fibromyalgia, Scoliosis
"You learn who your friends are. I went to arthritis camp when I was a kid. Telling my friends I went to arthritis camp, they would giggle and I would say, 'No, I’m serious.' There are a lot of issues that don’t get acknowledged in the disability community. There’s a lack of intersectionality shown on foundation websites. It was kind of depressing. I can’t say I became a militant activist, but I became angry enough to be more vocal about it."
Photo: Courtesy of Amanda Crommett Photography.
Tatianna, Endometriosis
"The biggest thing, especially with endometriosis, is that so many women go undiagnosed for so long because they’ve never heard of it. The problem I had with my doctor was that I would go in complaining of pain and he said 'Everyone goes through this, it’s called a period.' It took me a good six years before I finally got diagnosed. Although on the outside it may look like every now and then I get period pains, you don’t realize that no, it’s an everyday thing...I don’t want everyone to know I’m in pain, [but] I am."
Photo: Courtesy of Amanda Crommett Photography.
Ryan, Ulcerative Colitis
"A lot of my friends didn’t know about it. I didn’t want to burden them. I was afraid if I said anything, it would come across as 'pity me,' but at the same time I kind of wanted to tell people 'Hey, this is what’s going on, just so you know' if I have to leave class or something. So it’s that weird balance of figuring how much do you tell, how much do you disclose."
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