Review: Women Living with Multiple Sclerosis

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Women have a tendency to form close bonds with other women. It’s an intrinsic quality and it seems almost necessary for emotional survival. Men have their bonding methods (the Superbowl, horseshoes, golfing, and smoking cigars), but women naturally gravitate towards other women for feedback, inspiration, and support. It’s not surprising then that ladies with multiple sclerosis often find themselves in close-knit circles such as support groups, chat rooms, message boards, and blogging communities. One such online group forms the basis for the exceptionally heartwarming book Women Living with Multiple Sclerosis.

Written by professional journalist Judith Lynn Nichols, this book tracks the online camaraderie of 20+ women who formed their own email support group after meeting each other through a message board. Nichols tells of her own 30 year battle with MS and discusses how it affected her child rearing and her marriage. Her career as a reporter was also affected as her disease progressed, and she found solace and understanding with this group of tough MSers, dubbed the “Flutterbuds” due to members’ memory flutters.

The group discusses such topics as cognition issues, constipation, sexual challenges, the common “But you look so good statement”, disability income, and working with multiple sclerosis. The beauty of this book is that each topic comes with a multitude of opinions, personal experiences, and solutions. Together, the group supports and encourages those who need it. It is a testament to true, deep friendship.

This book actually came into my life before I had a good idea of what multiple sclerosis was all about. I was in a state of denial for some time, because I could get away with seeming “normal” for a number of years. Now I find this book comforting because it makes weird, scary symptoms acceptable and okay as these women share their experiences with all of them. Nothing is too strange or crazy among this tight clan and readers will feel included in their understanding and camaraderie.

PS: There is an excellent sequel to this book, Living Beyond Multiple Sclerosis, which continues the story of the “Flutterbuds” and tackles new MS topics.

12 comments

  • I read this book a few years ago and highlighted and marked so many sections because they talked about the same symptoms and problems that I was facing. It’s a dog-eared treasure on my bookshelf. I highly recommend it.

    I will confess that I was not at thrilled with the second book, not sure why.

  • Jen

    Yes, Joan, I agree that the first book is better. And I can’t remember why, either! I read both about 3 or 4 years ago. I have my own copy of the first one, too.

  • Cool – I am going to get this book! Thanks for the review!

  • Jen

    Seriously– this is one of the best books about MS and female friendship out there. I go back to it often to bolster myself up. There are so many “how-to” books that aren’t written by MS patients but scientists and doctors. So this one is unique and definitely worth a read.

  • Hey there…

    I thought I had lost ya. You changed your name. Went to your old site and it was gone.

    yes this is a great book…i have it in my bookcase! they even talk about sex!

  • Thanks for sharing this review. I have not really found a support group either but I find that I get a lot of great support out here from people like you. Thanks for being such a caring friend.

  • Jen

    You’re welcome, Nadja. I didn’t seek out people when I was having a rough time. I knew one person with MS who was doing way better than me and one who was doing a lot worse. Here it seems like people can at least find others who are somewhat similar in disease course.

    I haven’t had the guts to attend an in-person support group yet. I’ve been to a few one shot seminars and have met some other MSers while volunteering, but nothing steady or deeply revealing . I’m not sure I’m ready for that(yet.)

  • I have this book, but haven’t read it yet. I got it sometime in the spring after getting more involved in the MS Blogging thing. Growing up around mostly boys, it took me many years to learn how to have girlfriends. I’m glad that I finally learned that skill.

  • Jen

    Hi Merely!

    What’s sad is that I haven’t even told my buddies who occasionally read this that the URL changed. My parents (usually silent readers) and I guess anyone else they tell know the new web address, but I still have to email some of my friends about it. So if one of them occasionally reads, they are completely confused right now. Where did Jen go?…

    Yeah– this book talks about self-catheterizations, running to go poop (a subject near and dear to my heart), and yes– SEX.

  • Jen

    Lisa–

    You’ve gotta read it. It has MSers of all abilities, just like in the blogosphere.

    It’s funny but I often prefer the company of guys. I’m kinda a tomboy (I wear lipstick on occasion and I dress like someone out of an LL Bean catalog.)I also enjoy fishing, golfing, and going down to Atlantic City. Bill and I always laugh that he’s the sweeter, more compassionate woman and I’m the braver, gruffer man. Role reversals. I’m beginning myself to appreciate the company of women.

  • Book reviews rock…even if I never get around to buying/reading the book, I always feel I’ve gotten something important from reading a review. THanks!

    Linda D. in Seattle

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