Allie Cashel and Erica Lupinacci no longer want to suffer in silence.
After dealing chronic illness for the majority of their lives -- Cashel with Lyme disease and Lupinacci with lupus -- and feeling like they were alone in their experience, the two childhood friends paired up to speak out. The result is a gorgeous photo campaign of other chronic illness sufferers coming forward about their conditions.
"We don’t always think of disease as something that affects identity. Instead we think of illness, chronic illness included, as an isolated experience," Cashel told The Huffington Post. "Patients dealing with persistent illnesses need to redefine what it means to feel normal. They need to ration their time, to make sure that they don’t push themselves too hard or put themselves in a place where they get too sick, or feel too much pain. That experience affects so much of a person’s identity."
The portraits showcase multiple young people as they boldly display their particular diagnoses, which range from scoliosis to rheumatoid arthritis, with symptoms including persistent pain and fatigue. Many people who suffer from chronic disease also experience mental health issues. While exact figures aren't certain for young people, approximately half of all adults -- 117 million people -- have been diagnosed with at least one chronic health condition, according to a 2012 Centers for Disease Control report.
Lupinacci told HuffPost that while many chronic illness sufferers may not "look sick" to the outside eye, they each must deal with daily challenges that can sometimes even make it hard to get out of bed in the morning. She hopes the campaign brings a sense of community to others who may be suffering from chronic illness.
"I want to show people who are living with disease that they are not alone," she said. "They are not crazy, they are not useless, or lazy. They are incredibly strong and brave and deserve as much happiness and respect as anyone else. There isn’t a space in our society for people who experience disease to talk about it without feeling judged or misunderstood. I hope that this can help us get to a place where we can find that. "
“I want to show people who are living with disease that they are not alone ... They are incredibly strong and brave and deserve as much happiness and respect as anyone else.”
Cashel is releasing a book, Suffering the Silence: Chronic Lyme Disease in an Age of Denial, later this fall. It's centered on her personal experience with Lyme disease, a tick-borne illness that yields an estimated that 329,000 new cases in the United States each year and can cause fatigue, severe headaches and nerve pain. Most cases of Lyme disease, if caught early enough, are resolved after a few weeks of treatment. The diagnosis of chronic Lyme disease, where symptoms persist sometimes even years after treatment (many doctors refer to it as post-treatment Lyme disease syndrome), is still controversial given that medical professionals are "divided on what it is, what causes it and how best to treat it," the Wall Street Journal reported.
Cashel has been experiencing symptoms of Lyme for more than 10 years now, after first being diagnosed in 1998. Her advice for those who may be affected by any disease? Don't keep your feelings about your experience bottled up.
"Talking about Lyme has been such an important part of my healing process," Cashel said. "Once I started owning the truth of my experience with this disease, I found empathy in people and conversations that I never expected to find. Hearing other people share their experiences with illness helped me to better understand my own."
Check out a few images from the Suffering the Silence photo campaign below.
"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 don't 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." -Vivian, scoliosis (via sufferingthesilence.com)
"There is such a stigma around HIV, people automatically disable 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." -Ty, HIV (via sufferingthesilence.com)
"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 and it was kind of depressing to the point that I can’t say I became a militant activist but I became angry enough to be more vocal about it." -Chiara, rheumatoid arthritis, fibromyalgia, scoliosis (via sufferingthesilence.com)
"Ninety percent of people with Hemophilia contracted HIV and/or Hepatitis-C in the late '80s, 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 percent of the world still doesn’t have access to the medicine or care that we do, that 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." -Patrick, hemophilia (via sufferingthesilence.com)
"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, not only about my condition but also the educational part of being a diabetic has really helped me along in my journey to be accountable not only for myself but everyone around me." -Christian, Type 2 diabetes (via sufferingthesilence.com)
"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 every day thing and just because I don’t want everyone to know I’m in pain-I am." -Tatianna, endometriosis (via sufferingthesilence.com)
"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." -Evan, Crohn’s disease (via sufferingthesilence.com)
"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." -Allie, chronic Lyme disease (via sufferingthesilence.com)
"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." -Reisha, asthma (via sufferingthesilence.com)
"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 to be like '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." -Ryan, ulcerative colitis (via sufferingthesilence.com)
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