Wednesday, 06 January 2016 15:02

New book highlights challenges of living with an invisible disease

Written by  Matthew Liebenberg
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The challenge of learning to live well with a chronic disease is the focus of a new book by Saskatchewan author Madelon Smid.

She will be discussing the book Chronic Challenge: Living Well with Chronic Disease and the challenges facing someone dealing with an invisible disease during two public events at the Kyle Library at 2:30 p.m. on Jan. 15 and the Swift Current Branch Library at 7 p.m. on Jan. 20.
“I’m speaking more about the subject of the book than the actual publication or launch of the book,” she said.
“I want to speak to the people who are out there, suffering, coping with these diseases and want a little bit of support and help, and their family members who are desperately wanting to find a way to support and help them.”
Smid, who lives near Swift Current, has interviewed close to 100 people across Canada for this project, including between 25 and 30 people with chronic diseases. It has been a long-term project that she has been working on since 2000.
The information from all the interviews will be published in two parts.
The current book focuses on the people suffering from different chronic diseases. She is planning to publish the second part in the summer.
“Originally it was all one book, and I broke it into two because the second part is all about the other people that I interviewed,” she explained. “The families and bosses and everybody who’s affected around you — your children, your siblings, your spouse, your partner, and wonderful, wonderful information from them on how they felt around it, how they learnt to cope with it as well, how they live with it now.”
She has interviewed people who are suffering from various chronic conditions, including Crohn’s disease, fibromyalgia, lupus, diabetes, heart conditions, seasonal affective disorder (SAD) and multiple sclerosis.
She refers to these chronic conditions as an invisible disease because the symptoms are not evident to others.
“You are facing not only all of the pain and confusion and frustration around the symptoms that you have, but there’s skepticism that there’s anything wrong with you,” she said. “Quite a lot of the people have been called malingerers or hypochondriacs or something until finally they are diagnosed, which is a huge relief for them. ... Then they face it again when they go out into the workplace and try to pick up their lives because they have limitations now and they are suffering silently and invisibly.”
People were quite willing to speak to her about how they were coping with their chronic conditions.
“I never asked anybody for an interview who said no, and most of them spoke quite openly about even the most embarrassing parts of the disease,” she said.
These challenges are familiar to Smid as a result of her own experience with Crohn’s disease. She was therefore not surprised that people agreed to do the interviews.
“People really want to know that there’s other people out there with whom they can identify,” she said. “I think they felt that they had somebody who came into their life with whom they could identify, the disease or the general symptoms of what they were going through, or the changes that they had to make in their life, and they wanted to pass that on to other people.”
She acknowledged it was a challenge to write about her own experiences of coping with a chronic disease, but it was necessary to do that.
“It was difficult but I felt it had to be a totally honest book to be credible,” she said. “So there’s quite a picture of what I’ve gone through and what I deal with on a daily basis now, but it doesn’t read like my book. ... There’s bits and pieces of me throughout it, but very much focusing on these really wonderful people who have contributed, who have been willing to share their experiences — good and bad — with the people out there.”
Her intention was to write a book that will be uplifting and that will provide useful information to those who suffer from a chronic condition as well as those around them.
“It’s really easy to read,” she said. “I think it just grabs you and you can move through it quite quickly. It moves in progression from the initial confusion and frustration around getting a diagnosis to learning about your disease through all of the changes that you have to go through from mental, physical, to emotional, to changing your lifestyle, from the way you handle your finances to the way that you get around or communicate. So it’s very comprehensive, and in the end there’s just some wonderful stories about how people are living really well with their disease.”
The book is now available at Pharmasave in Swift Current and as an e-book on Kindle and Kobo sites. Copies can also be obtained by sending an e-mail to This email address is being protected from spambots. You need JavaScript enabled to view it. .

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