Ilana Jacqueline spent close to two decades on a steady regimen of antibiotics and sick days. In fact, during her senior year of high school, Jacqueline’s immune system was in such bad shape that she couldn’t stay awake for more than a few hours at a time. “I came to school for about an hour to two hours a day,” she shares. “I would go in, collect my work, speak with my teachers and then go home. If there were days I had to stay longer, I had to sleep in the nurse’s office for an hour here and there and try to work around my fatigue.”
In and out of Boca Raton Regional Hospital with alarming frequency, Jacqueline visited medical professionals all across South Florida. But doctors and specialists were baffled by how she couldn’t even fight off a common cold without medical intervention, and they wondered what was at the root of her unusual symptoms.
The eventual answer was twofold. First, doctors discovered Jacqueline has Primary Immune Deficiency Disease (PIDD), a rare immune system disorder she was born with, though no one could put a name to it until she was 19 years old. A few years later, Jacqueline was saddled with yet another diagnosis—this time a chronic disease of the autonomic nervous system called dysautonomia.
In 2012, at 22 years old and beset with the challenge of balancing day-to-day life with active chronic diseases, Jacqueline launched “Let’s Feel Better,” a blog where she writes about “dragging dysautonomia through my 20s.” It’s an outlet for that distinctly “Ilana” combination of good-natured sass plus compassion put into action.
Jacqueline accepted a book deal in 2015 from New Harbinger Publications, which evolved into a paperback released in March. Her goal in publishing her story was to educate and empower a wide audience, especially those affected by rare illnesses, who are often overlooked and misunderstood. “When I wrote the book, I wrote it [because] I wanted a guidebook that would’ve been useful to me as a patient,” she explains. “When I was going through trying to explain my disease to my family, when I was going through all of the issues at the beginning that I didn’t know how to cope with—this is the book I wanted to have.”
A book about living with rare chronic diseases could be weighty, but Jacqueline handles her story with such dexterity that Surviving and Thriving with an Invisible Chronic Illness: How to Stay Sane and Live One Step Ahead of Your Symptoms is as much a beach-read as it is a self-help book. “I really didn’t want to come out with a sob story, because I really don’t look at my life as something that’s a tragedy,” she laughs. “This is just all I’ve known. I want people to read this book and laugh, and not be depressed and not feel ashamed.”
By sharing the details of her life with an invisible illness, Jacqueline intends to change preconceptions about chronic diseases and the people who have them. “I’ve been focusing on taking the stigma out of chronic illness,” she says. Jacqueline leads her reader to understand that invisible illnesses are sometimes just that—hidden from view but debilitating nonetheless.
“I think the book is really good not just for patients with chronic illness, but for parents, for caregivers, for spouses, for teachers,” she says.
With a fighter like Jacqueline at the helm, invisible illness gets a name and a face, and the shroud of misconception lifts a little bit higher. “I think that the more patients discuss [their diseases] and are a little more open about it, the better it is for everyone. I am a person. I’m not just a patient.”