In the last post , I spoke of how many of us constantly seek out information regarding our chronic illness believing that the more we know, the better we will be in managing our illnesses. Although being well-informed is a good thing, we can sometimes lose sight of a couple important things if we aren’t careful. One ‘thing’ is that, to truly learn, we must apply what information we take in. Secondly, our intuition has already been doing a great deal of evaluating and assessing for us that we can miss out on if we don’t listen.
We have extraordinary resources these days via the internet to seek out more and more information, offering us countless opportunities to live well in the face of chronic illness. All of these opportunities are based on the value of dialogue – whether with your doctor, loved ones, employers or those you ‘meet’ on the social networks and websites.
Today, I want to introduce an opportunity to join in on another great dialogue.
Every month, we will be facilitating discussions centered around books that explore many sides to living including illness, but not limited to it. This month, we are talking about the book Despite Lupus: How To Live Well With A Chronic Illness. As a special treat, the author, Sara Gorman, has graciously offered to join in and talk right along with us! Her book (and her perspective) is more of a conversation about ideas than a self-help manual. Her approach reflects the MLWT’s mission in recognizing the abundance of our own, personal knowledge of illness and creating the chance for a dialogue to strengthen it. Offering a conversation is probably the best way to support a person in the throes of their adjusting to physical and emotional change.
We won’t just be discussing lupus during November—we’ll be discussing our lives in general, that just happen to also involve living with illness. If you ‘know’ what illness is about, please join in on the conversation. If you are new to living with a chronic illness, join in on the conversation. If you don’t think you need any support because you are doing okay with your lupus, join in on the conversation. These book groups aren’t going to be just about reading the books—they are a chance to take part in this social connection that is more similar to sharing a cup of coffee and enjoying a conversation than attending a support group. For some people, support groups just aren’t what they are looking for and bulletin boards can sometimes get too overwhelming. These book discussions offer you opportunities to have something in common to share rather than just lupus, but if the subject of illness creeps in, no one has to explain themselves.
Here is Sara’s opening for the discussion. If you prefer to take part here on the blog rather than sign up for the other networks, simply comment on this post with your thoughts and I will transfer them over to the Shelfari.com discussion. The month-long discussion can be viewed by clicking on her book’s image shown in the right sidebar on our website’s main page. The other networks where this discussion is being hosted are listed on the side bar once you open one of our posts. We are also hosting it at WeAreLupus.org under the “MLWT Target Practice” community.
Join in on this opportunity to explore what we already know and celebrate with others who are doing the same.
Author Sara Gorman:
“Hello and thanks for joining the discussion! I’m thrilled to be participating in the virtual book discussion of my book, “Despite Lupus”, and look forward to answering any questions you might have about the book. Feel free to ask about the content, the cover, the publishing process, or any aspect of my personal experience with lupus – I’m happy to share. The book is available on my website – which is www.despitelupus.com, at MLWT’s blog, at several bookstores across the country, and on Amazon.com. I update the blog on my website several times a week, so feel free to stop by if you’re searching for more “Despite Lupus” talk. I just recently posted a ton of reader feedback on the site (found under the menu category “Reviews and Reader Feedback”), so you can see what others are saying about the book before chiming in.
Since the book came out in May (on Amazon.com since June), I’ve been hitting the book touring circuit pretty hard. Each book signing has been better than the last, and it’s been wonderful meeting and connecting with so many people across the country, most of whom have lupus just like me. I’ve had to be mindful of how many events I take on, of course. Even though I’m living well, I still have to find time to rest up and not overexert myself. Lupus is still very much a part of my daily life, but now that I have the disease under control (thanks to the steps I’ve taken to live better – all of which are outlined in the book), I feel like I’m the one calling the shots, not the disease. What a relief!
Having just returned from a book signing event this past weekend (the Lupus Walk in Richmond, VA. Go Richmond!!!), I’m primed and ready for your questions and anxiously await your comments. In the meantime, I’ll leave you with a question that came up several times throughout the event. Here you go and thanks!
Q: What advice would you give to someone who’s been diagnosed with lupus?
A: Oh man! Where should I start? Off the cuff, I’d pass on a couple pieces of advice that I learned in my lupus support group years ago, when I was newly diagnosed:
1) Allow yourself to work through those initials feelings of sadness, anger and frustration. Grieving for yourself and the life you used to have before lupus is a very natural (and I think healthy) process, something that the more seasoned members of my support group encouraged me to do.
2) Once you’ve allowed yourself to do this, realize that while lupus is a chronic, life altering, unexpected (and unwelcomed) change in your life, you can still live well, despite it. You have to step back and say, “Okay, I’ve got lupus. Now what can I do to improve my life with this disease?” Every day that you consciously decide to help your cause (take your meds as prescribed, reduce your stress, rest an extra hour or two, pass up on an outing that you know will push you beyond your limits), you’ll be one step closer to living well.
It takes courage, patience and self-awareness, but you can do it. Life with lupus can improve – that’s the best news out there! ”