After years of struggling with Lyme disease, Allie Cashel wrote her college thesis about her experiences with chronic illness. Today, Cashel’s thesis has grown into a book and a web community where chronic illness and disease sufferers are coming together to find support.
Following her graduation from Bard College in 2013, Cashel was offered a book deal for her Lyme disease thesis. While she worked on the book, which will be available in September, Cashel, along with friend and fellow chronic illness sufferer Erica Lupinacci, started online community Suffering the Silence to connect people living with chronic illnesses.
The site features a portrait series where people are photographed with the names of their chronic, “invisible” illnesses and diseases written on their arms. They series also includes stories about what life is like with these conditions.
“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,” explains Evan, who has Crohn’s disease.
“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,” says Vivian, who lives with scoliosis.
“It’s a place where people can be honest about their illnesses,” Lupinacci told TI of the online community. “It’s a place where people don’t have to put on a brave face and act like nothing is wrong.”
Keep reading to learn more about life with chronic illness and the Suffering the Silence project.
Allie Cashel was diagnosed with Lyme disease when she was 7. 'I struggled for years with the disease, but before starting my senior thesis at Bard, I hadn't really been able to talk about it,' Cashel told Tech Insider. 'I was very private about it and terrified that if I shared my experiences, people wouldn't believe me and even call me crazy.'
Erica Lupinacci has also spent years living with chronic illness, she was diagnosed with lupus in 2010. 'The frustrating thing about so many of these diseases is that they are invisible illnesses. You can look at either of us and think we are completely healthy,' Lupinacci said.
Even though the pair had been close childhood friends, they never discussed their mutual struggles with chronic illness growing up.
It wasn't until after they both graduated from college in 2013 that that Cashel and Lupinacci started swapping stories. 'So often, you don't want to make people feel uncomfortable or sound like you're complaining, so you put on this brave face and try to be super positive,' Lupinacci told TI.
'As we started talking, we found some really amazing patterns and overlaps in our experiences, even though we have completely different diagnoses,' Cashel told TI.
Inspired by Cashel's project, they created the 'Suffering the Silence' website to help other people find the same sense of support they found in each other.
'What social media has done for people who are chronically ill is incredible,' Lupinacci explained. 'These are people who might have trouble getting out of bed, who don't have a lot they can do in their everyday lives, but they have found friends and confidants they can connect with online.'
Since starting the site, Cashel and Lupinacci said the feedback has been positive. 'Everyone we've connected with has been very thankful that they've found the site,' Lupinacci said.
Their recent portrait series has been a big part of sparking conversation about chronic illness, because the pictures highlight medical conditions that are otherwise 'invisible.'
'There is something really powerful about the process of actually writing things down and showing the world what you've been going through, ' Cashel told TI. 'I think the same rings true for the portraits. To write your disease on your body, to actually have it live visibly on your body, is a real statement.'
Like Cashel and Lupinacci, the majority of participants in the 'Suffering the Silence' online community are also women.
'Often people don't understand little things, like there are times where I can't walk to the restaurant and I'll really need to take a cab instead. Or how going up to a 5th floor walk-up apartment is going to be hard for me,' Lupinacci said. 'Sometimes that does feel like a stereotype of a girl just being dramatic and high maintenance.'
Cashel and Lupinacci hope that 'Suffering the Silence' will also help people who don't suffer from chronic illness gain a better understanding of people who do.
'Now that I've opened up more about what it actually feels like when I don't feel well or what I'm scared of, the people in my life can better understand what I am going through,' Lupinacci said.
The two women also hope this movement will help eliminate the stigma and shame that often accompany chronic illness.
'As a society I don't think we like to talk about illness, but in reality many of our society suffers from some sort of chronic experience of illness,' Cashel told TI. 'We're trying to create a dialogue around that and make this experience more accessible to people who don't live with it everyday.'
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