This Is What Chronic Illness Really Looks Like

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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.

 

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