"But you're are so young..." Anyone who lives with juvenile or rheumatoid arthritis has heard this when others don't understand the nature of autoimmune disease. For Dan Malito, who has lived with juvenile arthritis for 26 of his 37 years, this statement had become a never-ending refrain and he decided to do something about it. The result is his new memoir So Young: a Life Lived with Rheumatoid Arthritis. This book is the story of his life and journey with RA. It is at times heartbreaking, at others laugh out loud funny. I recently had the opportunity to speak to Dan about his life and his new book.
Life with a Serious Illness
"The inspiration to write the book came from the disease," Dan explains. Six years ago, he was at one of the lowest points in his life, feeling "trapped in the prison of my own body." Since nothing else had worked, he decided to try writing. "I stared at Word for an hour, then started writing. Before I knew it, there was 30 pages." Dan had a purpose in writing a memoir about his life with RA. "I wanted to bring our disease to light, to tell the story of what it's like to live with a chronic illness with no end in sight, no cure." He writes in the book "as I got older, I began to ask people why they thought that chronic illness was not as serious as other types of ailments." His book is an attempt to correct that misperception.
Dan's experience with RA has been a difficult one. He grew up in a time where there weren't many options for treatment and when more drugs became available, he'd respond only for a short time. Subsequently, he has been through the wringer, both from RA and complications from living with an immune system that is "less effective than a screen door on a submarine and just as permeable." He shares many stories from his life that might be intimidating to someone who has just been diagnosed. "I took a lot out," Dan says, "I didn't want to scare someone who has just been diagnosed. We were the guinea pigs, but it worked. Both kids and adults now won't have this happen."
Two Encounters with Death
Dan has twice come close to death. Once was in the hospital with a bad case of pneumonia where it took "every ounce of my concentration to breathe." He remembers his mother sitting next to his bed, them sharing a look that said goodbye. Another time, he contemplated suicide. "No one wants to die you want the pain to end. You're trapped inside your body, with no way to get out. Suicide can seem like the only way to get out," he explains. In the book, he shares both experiences unflinchingly, showing the reality that can be life with a severe chronic illness.
Girls and Relationships
Girl crazy. This is Dan's description of himself as he grew up on Long Island. "I overcompensated when I was younger," he says. A big part of his book is devoted to telling stories of his escapades, both hanging out with his friends and his pursuit of girls. "I learned it takes a certain constitution to be with someone who has a chronic illness. You have to be willing to put in extra work you'll be rewarded twice as much, of course!" Still, after several relationships with "great women who didn't understand how to be with someone with a chronic illness," he resigned himself to living single.
And then he met Allison. "We first met when we were 15 and 17 and then we connected on Facebook four years ago. I knew within one or two weeks that this one would go the distance," Dan says. Three weeks after they started dating, his hip displaced. While they were waiting for the ambulance, his mother pulled his girlfriend aside and said "this is the rest of his life." She explained that if Allison needed to leave, it would be okay. Dan and his family would understand. "Allison was with me the whole way," Dan says, a note of wonder in his voice. In June last year, he proposed. Until now, they have lived in his mother's house, but are now looking for a place of their own. "I never thought I'd have that," he says.
Advocacy and Advice
Dan works as a writer, advocating for awareness of chronic illness. One of his causes is fighting against the increasingly stringent laws regarding narcotics. He explains that New York State has a new law mandating that every pharmacy can only get a certain amount of each narcotic a month, making it very difficult for people with high levels of chronic pain to get their prescriptions filled. "The ironic thing is that people who abuse drugs are not us. People who live with chronic pain are the least likely to abuse narcotics because they need the meds and only take them to deal with the pain." Dan continues, "when is enough enough? If we don't try to fight back, I'm convinced they'll eventually take away the top medications."
Dan's advice to those who have just been diagnosed with RA is also related to advocacy, this time self-advocacy. "The most important thing is to find a good doctor, someone you can trust. If you think your doctor is doing something wrong, don't take his word for it. Find a new doctor."
RA and Life Philosophy
Dan is doing better these days. "My rheumatologist is my hero. When I had C. difficile, he figured out I have Stills Disease." Dan was then prescribed Kineret, which is rarely used for RA, but which was developed specifically for Stills Disease. Combined with Arava, a low dose of prednisone and pain medication, he feels he's doing quite well.
Living with the challenges of RA has never given Dan any regrets. "I wouldn't do it again without RA," he says. "I wouldn't have turned out to be the me I am without the disease. Without it, I don't think I'd like who I would be."
You can read more of Dan's work on his personal blog, as well as his column for CreakyJoints and The Huffington Post.
Lene writes the award-winning blog The Seated View. She's the author ofYour Life with Rheumatoid Arthritis: Tools for Managing Treatment, Side Effects and Pain and 7 Facets: A Meditation on Pain.