Cameron Auxer knows chronic disease. She’s lived with it all her life, from asthma and osteoarthritis to chronic fatigue syndrome (CFS) and fibromuscular dysplasia (FMD). But she also knows the chronic illness online community, having forged deep connections with others through social media groups.
So in 2018, she published a book that gives a megaphone to those living with chronic illness, showcasing their stories of struggle, strength and survival. “When Bodies Break: How to Survive and Thrive with Illness and Disability” walks readers through the experiences of 32 inspiring, resilient people who share the common thread of debilitating chronic illness that often keeps them homebound.
“When we put the book together, I realized that between these two covers is a portable support group for people living with chronic illness,” Auxer says.
The first half of the book shares emotional, compelling personal accounts detailing the chronic illness experience. For many contributors, severe physical pain paired with cognitive challenges can be both disabling and isolating. But their stories make it clear they won’t let their diagnoses keep them from living an enriched, fulfilling life. The latter portion of the book is composed of essays offering advice on self-care, navigating the medical system and how to best advocate for oneself.
Many of the illnesses described are autoimmune diseases, like multiple sclerosis, juvenile arthritis and rheumatoid arthritis. That is why Auxer chose to donate all proceeds to support autoimmune disease research at Benaroya Research Institute at Virginia Mason (BRI). When she was seeking out a chronic illness-related charity to support, one of her collaborators suggested the nonprofit institute.
“I started reading about BRI and was very impressed,” says Auxer, who lives in Peterborough, NH. “Since many chronic illnesses have some base in autoimmune disease, I felt that most people in the chronic illness community would benefit from [BRI’s] research. The chronic illness community has given so much to me over the years.”
Auxer wanted to publish a book so she could give back. But the book itself grew out of another project. Before “When Bodies Break,” there was Pajama Daze, her educational website about all things chronic illness. Auxer created Pajamadaze.com following a sudden downward turn in her health.
After suffering three heart attacks within a week in 2005, she began experiencing symptoms of CFS, and her life “fell apart”. It wasn’t until several years later that she was formally diagnosed with CFS. She went into remission in 2015 (she still suffers relapses if she gets sick with a virus) and in 2010, she learned she had FMD. Throughout these experiences, when she needed support, the chronic illness online community was there for her. So she decided to launch Pajama Daze – which planted the seed for “When Bodies Break”, though she didn’t yet know it.
Pajama Daze (which is still going strong) grew into a multi-faceted website packed with resources, including a blog; advice for jobs opportunities and remote work, since many individuals living with debilitating chronic illness cannot work traditional jobs; essays by guest writers living with chronic illness; helpful information for both patients and caregivers, including web links for support groups and relevant organizations; and art by fellow members of the community.
Eventually, Auxer realized the contributors to her website were themselves a treasure trove of experience, insight and inspiration - and she wanted to tap into that to expand her reach beyond Pajama Daze. So in 2016, her contacts in the online community once again came through. At her request, many of them submitted new material, which she edited with care and compiled (in addition to contributing her own writing pieces). Together, they began to translate the Pajama Daze concept into a living, breathing book. It was a daunting task, one that proved to be as challenging as it was rewarding.
“Things move slowly when 32 people with chronic illness collaborate on a project,” Auxer says of the process, which took three years total. “Several people became seriously ill and were hospitalized during the process, and a couple almost died. I had several health challenges myself, as well as some huge disruptions. I consider it a miracle that the book got published. But here it is, a testimony to the heart, resilience and tenacity that surviving and thriving with chronic illness demands.”
Auxer plans to eventually launch an audiobook version of “When Bodies Break,” which is also available in e-book format. An audio format will make the content more accessible to individuals whose chronic illness or autoimmune disease symptoms make it difficult to read or hold a book.
Her hope is that the book can be helpful to people who are living with chronic illness and are feeling “stuck”. She also understands the whirlwind of emotions that accompany a chronic illness diagnosis, and hopes “When Bodies Break” can be one tool in the process of adjusting to a new reality.
“Even when you are relieved to finally get a diagnosis, it opens up a whole new can of worms. It’s like a Pandora’s box,” she says. “You need medications, you’re likely going to have special needs and it can be so hard to get things to line up for yourself. So I hope that the book helps to make it a little easier.”
“When Bodies Break: How to Survive and Thrive with Illness and Disability” can be purchased on Amazon.com. All proceeds support autoimmune disease research at Benaroya Research Institute at Virginia Mason.
October 15, 2019
Like What You Read?
Stay informed! Be sure you receive regular research updates. Subscribe
Join the Conversation
This blog does not provide medical advice, nor is it a substitute
for professional medical advice, diagnosis or treatment.