How To Be Sick - book

Discussion in 'Fibromyalgia Main Forum' started by victoria, Oct 27, 2010.

  1. victoria

    victoria New Member

    this might be an interesting read, the author's blog is at:


    "Suddenly, everything changed. In May 2001, I got sick with what doctors diagnosed as an acute viral infection. I have yet to recover. It has left me mostly house-bound and often bed-bound. Unexpectedly and without warning, I became part of the parallel universe of the chronically ill. Millions of people in this country suffer from chronic illnesses and other disabling conditions. This population is largely invisible to others. Before I got sick, it was invisible to me too.

    One reason this parallel universe is largely invisible is that many people with chronic illnesses, even those that are life-threatening, don't look sick. Let me qualify that. The people who are with us all the time know we are sick — they see those subtle differences in our demeanor when our symptoms intensify.

    We have a lot in common in our parallel universe. We often think it's our fault we got sick — as if it's a personal failing on our part. We feel that we've let our family and friends down (in the early years of my illness, I would sob to my husband, "I've ruined your life"). We get frustrated by people's lack of understanding about chronic illness. We share that dilemma of how to "present" to the world: Do we spruce ourselves up to try to look our best (and risk people thinking we're well enough to do anything), or do we let our physical demeanor reflect how sick we really are (and risk feeling guilty that we're not doing enough to lift our spirits)?

    ...Living with chronic illness can feel like a full-time job — a job for which we didn't train and often are ill-equipped to perform....

    ...It took several years (and many tears) to learn how to thrive in this parallel universe. I still have rough days when I wish I could do whatever I wanted (although, in reality, who can do that?). But, on the whole, I'm content and at peace with what I can do and how I can contribute, even if from the bed."

    ÷ ÷ ÷

    (author) Toni Bernhard received a J.D. from the School of Law at the University of California, Davis, and immediately joined the faculty where she stayed until chronic illness forced her to retire. During her twenty-two years on the faculty, she served for six years as Dean of Students. In 1992, she began to study and practice Buddhism. She lives in Davis with her husband, Tony, and their hound dog, Rusty, and can be found online at"
  2. 013101

    013101 New Member

    Hi Victoria and Jean. I've been a member of the Immunsupport Boards for a long time. Thanks so much for posting my article, Victoria.

    I was diagnosed with CFS/ME in 2001, so the book is written from that perspective even though it's for anyone with a chronic illness or condition. It's a very practical book, containing tools and practices to help us cope and live better with the life we're given (it's Buddhist-inspired but non-parochial -- the practices will work for anyone). People with CFS/ME who've read it write to me and say it's about reading about their own lives and that it makes them feel validated.

    I'm just so happy that the book is helping people. It makes all the hard work and toll on my health that it took to complete feel worth the effort. You can see more about me and the book at my website (my daughter designed it for me -- it's beyond my capabilities!):

    Again, thanks so much for posting my little article, Victoria.

  3. quanked

    quanked Member

    I was laughing when I read the title of your post. I did not realize that I needed to learn how to be something I cannot seem to escape.

    The book sounds interesting. When I finish "The Socially Skilled Child Molester" by Carla Van Dam I might give this book a try if it is not too long. I rarely read books anymore yet I can remember reading books into the night and the next day taking only bathroom breaks pre-CFIDS.

    Kind of funny--I too saw May 2001 as the beginning (at least a beginning I can recognize) of my illness.

    I could use some instruction on how to be sick at this very moment. I am in the middle of a crash and I feel so sick and frustrated. I am sick enough to feel wretched but not so sick that I do not feel like kicking back.

    Thanks for the info.
  4. 013101

    013101 New Member

    The author here again. Yes, the book is short (about 200 pages) and the chapters are short and have lots of headings. This is the only way I could write it because, like you, I find it hard to read. If you want to know more about the book, here's website for it (which my daughter created) has some links (on the left) that include the table of contents and the like.

    All my best,
  5. victoria

    victoria New Member

    I had no idea you were a member here... hope PH will write a piece about your book.

  6. quanked

    quanked Member

    I received your book from Amazon earlier this week and read over half the first evening. I found so many similarities in how you saw living with CIFIDS with how I have seen it. Some of the technigues you discuss strongly remind me of CBT (cognitive behavioral therapy). I used CBT techniques with clients in therapy and my therapist used them with me in my own therapy.

    I found your book exceptional. It is unlike anything I have read on CFIDS. To me, your words were comforting, kind and giving. Your writings portray this disease accurately without confusing and overwhelming the reader.

    As I read your book questions came up but I forgot them. I do not have access to my book to refresh my brain--it accidentally left on a 700-mile round trip a couple of hours ago as I had left in in my car : ) It will be home tomorrow so maybe I will get a chance to thumb through the pages again and reform my questions.

    But most of all, your thoughts inspired me to know I must work on letting go of more "stuff" so as to reduce my suffering--anything to lighten my load. As I ready your words I felt like, in many ways, you are living my life and I am living yours.

    Your book would be useful to absolutely anyone who has struggled in life whether they live with chronic illness or not.

    I am grateful for your book. Thanks you.
  7. victoria

    victoria New Member

    I did not know her at all when I posted this, but since then, she "found me" on FB woman that she is, she put 2 + 2 together.

    I've only briefly "talked" with her today, actually.

    (I "found" someone here at PH on FB that way as well, sometimes it is not hard).

    I also would not call myself a buddhist per se, what attracted me was what I read and excerpted above from her blog/website.

    So... no blame here or on Toni, in fact I admire her quietness about her book here. She's been a member for a good while if you look at her posts....