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."