I’m an optimist, usually happy to fend off life’s adversities with a smile and a smart comment. But when first my husband and then our only child were diagnosed with type 1 diabetes within a few years of each other, glib wisecracks were a pretty inadequate coping mechanism.
When my daughter Laura’s condition was identified just ten days before she turned four, I was already at a low ebb, having recently developed rheumatoid arthritis, followed by a case of pneumonia. At first I reeled from the shock, needing antidepressants to get me through the process of learning to manage the daily medical care of a child too young to be hypo-aware. Friends and relations were supportive in principle, but with no practical experience of type 1 diabetes, they were unsure how to help or what to say. They really tried, but sometimes the results were unexpected:
- The play-date at which the hostess, frightened that eating sugar might trigger anaphylactic shock like a nut allergy, made Laura spit out a chocolate she’d just been given by her little friend
- The children’s birthday party at which Laura was provided with a carb-heavy fresh orange juice as the “healthier” alternative to the diet sodas enjoyed by everyone else
In keeping with our medical team’s mantra “Don’t let the diabetes rule you—you rule the diabetes,” we tried to lead as normal a family life as possible. At the same time, I met many families whose lives were dominated by fear. They were governed by type 1 diabetes as if by a fascist dictator, with:
- a reluctance to let children out of their parents’ sight
- a ban on play-dates, sleepovers, and school outings
- even a ban on school itself, preferring the safety of homeschooling
Constraints applied to minimize risk also decimated the quality of their daily lives.
As a family, we decided from the start that we didn’t want Laura’s illness to diminish her quality of life in social terms. We didn’t take foolish risks, but nor were we held hostage by her condition.
This upbeat attitude works for us, and I wanted to share it with other families, particularly those with children newly diagnosed, to give them the heart to go on.
Writing as Coping
For me, the natural way to share any experience is to write about it. An author and journalist, I had already established my lively personal YoungByName blog as the obvious platform. Given that writing is my instinctive response to trauma, the occasional blog post about diabetes was inevitable.
Such related posts were usually written to mark a particular diabetes milestone, such as the anniversary of diagnosis. Each one was well received, even though most of my readers have no connection with diabetes.
From Blog to Book
The next step was to turn the blog posts into a book. I’ve become increasingly involved in the world of self-publishing as editor of the Alliance of Independent Authors’ blog of self-publishing advice. To self-publish a book based on the blog posts was the obvious solution.
From the start, I envisaged the book as a fundraiser, because we enjoy raising funds for diabetes research. Being able to do something constructive has been great therapy emotionally. I knew that publishing the book in digital form would cost me nothing other than my time, so it was an easy decision to allocate the sales proceeds to JDRF.
I assembled the posts, edited them for consistency, and added new material, including an introduction. A hopeful tweet to one of the UK’s most prominent broadcasters, Justin Webb, resulted in an eloquent Foreword, adding credibility and market appeal. (His young son had recently been diagnosed with type 1 while he was Washington DC correspondent for the BBC.)
Emboldened by his support, I next approached Dr. Carol Cooper, a prominent British medical journalist with more than 20 medical books to her name, plus a self-published novel. When I realized afterwards that she also teaches communication skills to trainee doctors, her response meant even more:
“It’s a lovely uplifting little book, full of insight, wit, and practical know-how. I think it will appeal to anyone with type 1 diabetes and their family. Health professionals would also find it useful. The book is beautifully written. A little treasure as well as a ray of hope.”
With these endorsements providing useful marketing straplines, I was ready to roll.
Launching the Ebook
Coming To Terms With Type 1 Diabetes was launched worldwide as a Kindle ebook on World Diabetes Day 2013. JDRF UK gave it a shout-out on their website, and the local radio station, BBC Radio Gloucestershire, invited me to their studio for a live interview.
In the four months since the launch, my book has earned 15 five-star reviews on Amazon UK, and more great feedback elsewhere. I’ve had an enthusiastic response not only from families affected by T1D, but also from their friends and relations eager to understand how the disease affects everyday life. They’ve told me that reading my book has made it easier for them to be more supportive than before, and they’ve asked for more of the same. I’ve also had requests to make the book more widely available.
Plans for a Paperback
Accordingly, I’m now planning to launch an expanded paperback edition on World Diabetes Day 2014. New material will include further anecdotes from my own family’s experience of life with T1D, plus an article from the current chair of JDRF UK. I’ll also add historical perspective with a brief history of the treatment of type 1 diabetes and the progress towards a cure. As before, the book will end with an appeal for donations to JDRF, to hasten the day when that cure is found. With the prospect of a tangible paperback to show people, I’ve now volunteered as a public speaker for JDRF.
Whenever we’re having a bad day, as everyone with diabetes does, with soaring blood sugars, plummeting hypos, faulty kit, or simply a rush of rage against the disease, knowing that my book is helping others cope with diagnosis and funding research into a cure makes it easier for my family to smile in the face of diabetes and move on.
Debbie Young is a British author and journalist, living and working a small English village in Gloucestershire. She writes advice guides for self-published authors, including “Sell Your Books!” published by SilverWood Books and, with Dan Holloway, “Opening Up To Indie Authors”, to be launched at the London Book Fair in April 2014, published by the Alliance of Independent Authors. She is also available as a public speaker, and her 2014 diary includes talks at the Cambridge Literary Festival, The Romantic Novelists’ Association Annual Conference and the Homeric Writers’ Retreat and Workshop on Ithaca, Greece. She also writes short fiction and memoirs about subjects other than diabetes, such as international travels with the family camper van. For more information, please visit Debbie’s author website: www.authordebbieyoung.com, where you’ll also find her YoungByName blog, or the page for the book.