When facing my lupus diagnosis, I sought out many books covering medical terms, confusing symptoms, current and potential treatment options – all to quench my thirst for conquering this disease single-handedly. Early on, I didn’t recognize myself as a part of a medial team or a community. Basically, my attempts to control my illness meant shutting off any communication that didn’t offer me any sense of personal control.
Last month, I had the opportunity to review a new book on lupus that I believe, after reading it twice, would have saved me some valuable time, tears and energy if it were around when I first started my adjustment process in learning to live with illness.
The book is entitled Despite Lupus: How To Live With A Chronic Illness (Four-legged Press, 2009) and written by Sara Gorman, who authors a blog under the same name. I have been reading Sara’s posts for over a year now and have always felt a connection to her perspective on living with lupus by making self-supporting choices in living well. When I received her book, I was thrilled to find the same tone and presence in her book as I’ve enjoyed on her blog. She offers a comfortable blend of approaches including a ‘think-out-loud’ way of sharing her own personal experiences in adjusting to lupus and a casual, supportive style covering some practical tips, exercises, tools and questions as if you both (reader and Sara) are simply chatting over a cup of coffee.
Her book doesn’t focus on the medical information that can sometimes overwhelm us- especially early on in our adjustment process. It is important to learn as much as we can about how our bodies work/don’t work, what our treatment options are/aren’t and what we can do personally to manage our symptoms. However, coping and adapting to illness is complicated and requires addressing some of the emotional and behavioral choices or decisions we will face along the way. This is where Sara’s book shines ~ its mission is to encourage the reader to look at their own personal roles in defining their lives with lupus and respecting their physical needs necessary to make their lives outside of lupus as fulfilling as they wish them to be. She reinforces this by using the theme of communication throughout the book and shows how crucial it is in creating those fulfilling lives. I found her chapter on communicating with doctors particularly valuable, as I believe the relationship between patient and physician is key in establishing healthy adjustments to and better choices regarding lupus early on.
Despite Lupus offers a great deal of information in a narrative style, rather than more of a workbook or structured format. At first, it was difficult for me to see this as a ‘how-to’ book, simply because I am so used to other books leading me through steps that I could easily skip and exercises that I could blindly avoid. Whether she meant to or not, her book’s format challenged me to read through, lulled by the sense that I’m learning from someone who “knows” what having lupus is like, only to discover that I had stumbled upon yet another skill-building technique I thought I had mastered the art of snubbing. After a decade with lupus, I had grown jaded at reading the same tips and suggestions over and over, no matter how valuable I knew they truly were in coping. A passage from Sara’s book perfectly describes my lupus moments or ‘fits’ I experience even today:
” …when life is forced upon you, without your consent, as your chronic illness has been, you panic. You rush to defend yourself against the intrusion, fighting to preserve the comfort and control you’ve always known. Not only are you seizing the past, you’re grasping the future. You believe your plan is the only one that will lead to your desired destination, and anything else is a ruse. “ (Page 85)
I have several books on lupus, or chronic illness in general, that cover the emotional and behavioral challenges we face within our self-concepts (or identities) when dealing with illness. Sara delivers suggestions and steps in a way that gently encourages the reader to consider them, because they have worked for her. I found that I was much more open to actually do some of them the second read through (I’m just extra stubborn), even when I knew they were coming up. She offers them as a friend, not a guru, and that helps me remain open to trying.
Sometimes hearing other peoples’ tales about their lupus experiences can be frightening, deeply saddening and leave us more locked into refusing change than ever before. I can assure you that Sara’s book provides clear pointers for newly-diagnosed patients and some valuable reminders to those of us already well-versed at lupus. By learning more about her, she inspires us to step back and consider possibilities, communicate more clearly who we are to ourselves and others – and to define our lives to be well worth living, despite our lupus.
October 23, 2009 Update:
Sara will be joining in on our November book discussions! We will be on the Ning Communities of Ardent Celebrations and LupusMCTD, WeAreLupus.org and Shelfari.com. We will also put up a post on our website November 1st introducing the discussions , so that you can comment about the book here if you prefer. Sara will be doing the same on her website. We look forward to you joining us~
I was not paid for this review. Sara sent me a copy of her book for review. The opinions expressed are all mine and I thank Sara for allowing me this gracious opportunity.