How To Be Sick: Discussion 2

“You can argue with the way things are. You’ll lose, but only 100% of the time.”
-Byron Katie

As we finish reading the section of the book titled How Everything Changed, we learn about some of Toni’s secret coping mechanisms for making it through the her part-time workday, including–but not limited to–peeing in a thermos. We’re also treated to an alphabet soup of acronyms (CFS, PVS, VICD, OI, POTS), as we read about the laundry list of conditions and diseases that Toni was diagnosed with.

Discussion Questions

  • Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?
  • If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?
  • We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

This post is part of RA Guy’s Book Club for “How to Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers,” by Toni Bernhard. For a complete list of discussions, please click here.

56 Comments
56 comments
  1. Susan Kirk says:

    Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?

    I pray a lot. I struggle with this but I do try to think of all the things that I still can do well without help from others.

    If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis?

    I was a bit relieved to learn I had RA not realizing what a devastating illness it can be. It took a long long time for it to sink in, and again, I struggle with this, that there is no cure, and that I will have RA “forever”.

    What do you hope to achieve from reading this book?

    More coping skills and acceptance without giving in to the illness.

  2. RA Guy says:

    Ironically enough, a year ago this month I found myself frequently peeing into a jar…and this is when I was at home! I now work from home, which makes things much easier, but when I was working outside of my house my coping mechanisms weren’t so secret: I asked for a classroom on the first floor, I tried to get in as many “sit breaks” as possible during class, I would have student run many of my errands on campus (photocopies, cafeteria, etc.), and last but not least I ditched my dress shoes for a more comfortable pair of tennis shoes.

    I had many mixed emotions when I received my diagnosis. First, I was relieved to finally know what was wrong with my body, and happy to know that we could start some treatment options. On the other hand, I was shocked with the “chronic” part of the diagnosis. There were days where I just couldn’t believe that all of this was just going to last for ever…so much so, that I sometimes used to think that it would have been better to have received a terminal diagnosis, because with something like that, at least there would be an ‘end’ in sight. I no longer think such a thing, but having connected with so many people over the past few years, I now know that I’m not the only one who has ever had such thoughts regarding chronic versus terminal illness.

    Three years ago, I declared–in one of my early blog posts–that I wanted to make my emotional well-being and personal feelings of happiness less dependent upon my physical state and less dependent upon the presence/absence of pain. I’ve made great strides during the past few years, and I hope that by reading this book, I’ll learn more ideas and techniques to help me continue to move forward in this regard.

  3. Nancy Aurand-Humpf says:

    Secret coping mechanisms- I try to meditate daily and be kind to myself. I often wish I could feel better because I know at times it drags my family down. I end up being hard on myself, doing too much and then I’m no good for anyone. So I give myself permission to feel bad, and monster my inner dialogue.

    Feelings about my diagnosis- I am a chronic daily migraine sufferer. My disorder is one that gradually got worse over a number of years, eventually progressing to the stage I’m at now about 10 years ago. I know that it is not likely that I will get better, but it is like being kicked in the stomach every time my neurologist reminds me of it.
    I do not want to live in denial, but I have to try to remain in the present so I don’t sink into despair.

    This is my second time reading this book and it has helped me tremendeously.

    I read an earlier post by Tabitha. If you still need a book contact me on Facebook and I will send you one.

  4. Mombeenthere says:

    I too have gone through and still am going through the depression of wishing it was terminal (esp with all my other comorbities). I was pleasantly relieved to read Toni’s view on dukkah and the end of dukkah. It really put my feelings and emotions of dealing with a chonic illness into perspective. End of dukkah, Buddha reminds us about the “end of suffering in the mind” not the bodily pain which she mentions this is what the book is about…dealing with the pain by seeing how Buddha views this. So far I feel very enlightened.

  5. Mombeenthere says:

    I’ve gone through various stages of diagnosis and it’s still evolving. Starting with UCTD progressing with RA (sero neg) and still with the possibility it might be SLE. I feel like I’ve been walking a fine line as the disease has deteriorated my life over the last 14+ years, never knowing what my body is going have to tolerate next. I used to be a very happy, smiley person who would tell her patients that I would rather laugh than cry..but that was before the pain of RA got out of my control and I had to medically retire from a job I dearly loved doing (respiratory therapist). I would still rather laugh than cry but find most days the depression takes the best of me. Since I’m relatively confined to the house, pain meds can’t drive, I’ve viewed each room in my house as a separated office area like at work…kitchen is the cafeteria, sewing room is the special procedure room, computer room is like the tech room/office ect ect…it keeps me from going stare crazy this time of year. I know this sounds kind of nutty but isolation does nutty things to our minds. I like to write alot it help me to vent when even those people who support me the most appear to be tired of constantly listening to my complaints.

    What I hope to continue getting out of Toni’s thoughts are how to maybe view my chronic illness and its challenges in a different light. So far “dukkah”, “end of dukkah”, “noble truths” have made perfect sense to me and have change some of my feelings from a negative to something I might be able to live with and make my life fuller/happier. Viewing my constant changing diagnosis and treatment is enough to make anyone unsure about their quality of life. But as the meteorologist prepares Dave for his TV spot (ch.4 pg.29) he says,”It’s the wind, man…It blows all over the place.” As too does our journey with chronic diseases. Toni further explains about the wind blowing away the depression in hopes of replacing it with more joyful times…”end of dukkah”…not end of pain in the body but of the mind.

    This book is very thought provoking and not being familiar with Buddha’s teachings and language requires that I really have to pay attention (brain fog) to what the author and Buddha are trying to tell me…because I now know there are very important lessons here for me to understand. This requires, many times, reading a chapter and then going back to reflect and meditate on how this could change me. I too am thankful for this book group sharing with me the messages they are receiving. It helps me to see Toni’s visions from a different perspective. I hope RA Guy will continue this in the future…as being a support group but not just complaining of all our aches and pains but how we can change our situation…even those that have achieved remission might be more apt to chime in and feel like they belong even though they’re not in constant misery.

  6. Elizabeth Bastos says:

    * Secret coping mechanisms? Not so secret: Ice packs, baths, heating pads. Very secret: I started making an altar. So cheesy, I know. So cheesy, but I find it helps to have a place to put things that inspire me.

    * Response to diagnoses: What the fuck did it take everyone so long to figure this out? My insurance sucks. And also, oh fuck. The words “degenerative” delivered by (mostly young dude) doctors in their virile prime, while I sat in a paper smock, feeling small and frail and dependent on their knowledge, and prescription pads, thinking what on earth am I going to tell my young children?

    Why am I reading this book? I can’t change the hand I’ve been dealt. I realize more than ever that weird shit happens. I just thought that is happened to other people, isn’t that silly? I remember this Hagar the Horrible comic where Hagar is being hit by lightening and he’s saying to God, Why me? And God says, Why not? I’m reading the book to realize I am not alone, not by a long shot, in this world of chronic pain and illness, that we are a force, and that there has got to be some way to get through the day, with more grace than just clinging to the end of a branch like a distressed cat.

  7. Toni Bernhard says:

    Mombeenthere – I’m glad the book is helping. Yes, the Buddha was talking about “pain in the mind.” There are several stories in the records of his teachings where he had to endure great bodily pain. As we’re hoping to do be able to do one day, he was able to endure it with a mind that was steady and not tossed about my the pain. Just steady and at peace.

  8. Toni Bernhard says:

    Elizabeth – I wonder if Rosanne Cash knew the “Why not?” story when she made her comment that I quote in the last chapter! Publishing the book has made me realize I’m not alone because of all the emails I get in response to it and because of groups like this. It really does help to know “it’s not just me.” That’s why I found the Buddha’s teachings (in Chapter 3) on dukkha to be so powerful — and such a relief!

  9. Toni Bernhard says:

    Mombeenthere – I’m glad you’re going through the book slowly and re-reading chapters. I admit to still picking it up myself for help — and I wrote it! There’s no rush to learn it all and try all the practices. Maybe stick to the ones you find most helpful for now. I’m so glad you have the book!

  10. RA Guy says:

    Thanks for your generous offer, Nancy. I sent Tabitha your name and email address, and asked her to contact you directly if she was interested in taking you up on your offer. :-)

  11. Toni Bernhard says:

    Nancy – Thanks for your generous offer to Tabitha. I, too, have to work on remaining in the present moment on some days, especially when the relentlessness of the symptoms gets to me and I think, “Is this what the rest of my life will be like?” But I rely heavily on those Don’t-Know Mind and Are You Sure? practices and they really help me to see that I have no idea what the future will bring.

  12. Amy Clifton says:

    I have a lot of ways of coping, but the one I’ve learned to use the most is to give myself permission to do “nothing”. I listen to audiobooks, take hot aromatic baths, cook myself delicious food for myself even though I live alone. I had to stop working at a job I had loved about 3 years ago, so there really isn’t much I *have* to do on a given day. Still I have to quiet the voice in my head that tells me I should be doing *something productive*.

    I do not have R.A. I was diagnosed 9 years ago with a rare autoimmune disease of the liver, called Primary Biliary Cirrhosis (PBC). The diagnosis came by chance as result of some routine blood tests and later was confirmed after biopsy and a whole battery of tests. When I first heard the diagnosis I went down to the ocean and sat there listening to the waves and I promised myself that I would accept this illness with grace and not allow it to rule my life. Sounds good, huh…too bad I slipped quickly into denial and tried to continue living the way I had been, working hard, exercising hard, taking on too much at work. What I was doing wasn’t accepting, it was fighting. It took many years of worsening symptoms, connecting with other PBC patients on the internet, talking with a therapist, working in partnership with my doctors. Five years after diagnosis I finally realized I could no longer work (I had been a research geologist).

    I read Toni’s book over a year ago, during a 2 year period where I was suffering from chronic fevers and spent most of my time in bed. It has helped me tremendously to really embrace my life as it is. I want to participate in this book discussion because it helps me to hear what others have experienced and I want to share whatever I can to help others.

  13. Mombeenthere says:

    Being good to yourself…I’m glad you have given yourself permission…I’m working on it some days better than others. I know my life seems less painful and more worthwhile when I treat myself because it fills my “well” so I can share from that well to my family more frequently.

  14. Joan Hagy says:

    *****Do you have any secret coping mechanisms that you use regularly, in order to make it through your day? We all do, don’t we? I have to say that I felt so sad for Toni when I read about the thermos. Gosh, we just want to do what we have always done and we will do just about anything, in the beginning, to keep up the facade. Anyway, today I found myself unable to open my own thermos (coffee filled ;D) and said to my class of 7th graders, “I need a big strong 13 year old to help me out here.” I had 15 helpers in 2 seconds flat!

    *****If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? Wow, I was sort of relieved. I jumped right in on trying to get better, but since my progress seems to be two steps forward, five steps back, I face some depression now and I’m still dealing with the anger.

    ****We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book? I want to be at peace with the fact that I am sick and I will never be cured. I want that to be ok. I want acceptance.

  15. Kat Radi says:

    *****Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?
    I try and keep my mind occupied. I try not to worry. I keep lists – to save remembering, and i cook good food when i can. I appreciate small things.

    ****What do you hope to achieve by reading this book?
    I wasn’t sure what I wanted to achieve by reading this book, initially it was more to appease my little voice that was saying, “educate yourself, change yourself”. My mood has been slipping into depression over this summer because my expectations of myself have not been met, as well as being very bored and isolated. This book changed my mood overnight – literally. Thanks so much Toni! x

  16. MamaNym says:

    Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?

    I have the HOUR OF SILENCE during which the kids I babysit and my daughter nap and I banish my older (homeschooled) kids to their rooms, outside, or anywhere other than the room I’m in. I also “run errands” some mornings … and sometimes I sit in my van for a half hour just listening to NPR, reading, meditating and/or praying because it’s the only time of day I’m alone with my thoughts.

    If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?

    Immediately upon receiving my diagnosis at age 36 I was relieved and thankful. I finally had a name for the beast that was ravaging my life and that had reared its ugly head many times throughout my life. I’ve had chronic pain and inflammation for as long as I can remember. In the days following, the seriousness of PsA and AS started sinking in. The knowledge that the serious damage that had already been done wasn’t going to go away and pain would be my companion for the rest my life was devastating at first.

    We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

    I hope to continue on my journey of being at peace living in my body, and gain some practices that help keep me centered so that I can better balance all the aspects of my life with chronic illness.

  17. Connie says:

    Secret Coping Mechanisms: As I struggle to get through a long work day I often tell myself that I can do and withstand anything for X amount of time. When I find myself having difficulties with things I often remind myself of times when I have had to be strong and have accomplished things or gotten through things that I never thought I could. When my health is bad and the pain is overwhelming, I try to keep in mind that nothing lasts forever and I will feel better again, I just don’t know when.

    When I first received my diagnosis I was not surprised – I had researched my symptoms and was sure I had RA before I was told. I was a relieved to hear I definitely did not have lupus. I knew a sweet lady who has now passed away from lupus complications. I remember thinking, “Thank God it’s not that.”

    I first read this book about a year ago. It has helped so much. I am eagerly anticipating future discussions as parts of the book have been literally life changing for me.

  18. sherry m elkins says:

    I live with just my husband, our girls are grown and gone, but you would be surprised at how much they know about my day to day life. I don’t like keeping secrets but some things are personal (peeing in a thermos ), One thing I do now instead of a daily shower, I do “bird baths” in the sink, I wear Poise Pads because I’m incontinent,and have had accidents during the night. My feet are in pretty bad shape, with toes going every which way, so I buy good bedroom shoes and wear them out with pants when I have MD appts.

    Not all of my diagnosis came at the same time. Hubby and I used to go tent camping in the Fla. Keys every Feb. for our anniversary and his birthday, yes we were married on his birthday. That’s where I had my first symptoms. Now I have an olive complexion and normally tan easily, but that year, I got sun poison, followed by projectile diarrhea, and red hot swollen wrists. It was our second week there and I called my mom, told her what was happening and asked her to call my GP (of 15 yrs) for an appt. on the day I got home. So while hubby sunbathed, fished, socialized with friends we made down there, I crawled into my sweltering hot tent and spent the rest of the week there. At my MD appt. He was pretty sure but sent me to a rheumatologist to be tested for Lupus. I was devastated! I was so sick, how could I work? Some days, because I now had vertigo, I would lie in bed and cry all day. I couldn’t get up because I would fall on my face, the house flipped, so I would wait for hubby to come home, I’m so sick I’d say, and I’m so sorry you’re sick, he would say, as we both cried.

    I am reading this book because RA Guy recommended it. I will finish reading it, because every new diagnosis puts me mentally back to that first flare, and I am devastated all over again. I have cut my wrist,and taken pills, mentally, no place I ever want to go again. I want to not make the mistake of a permanent solution to a temporary problem.

    This was the begining of the end for me, I thought! I couldn’t possibly live like this. That flare lasted 4 months.

  19. Mindy K says:

    Secret Coping Mechanisms: I work night shift as an LPN. My job is pretty trying on my diseases (I have RA, SLE, epilepsy, and had three surgeries including a total hysterectomy for stage IV endometriosis). When I get home from work, my boyfriend is already gone to work, and I drive my kids to school. Then once I’m home alone, I peel off my scrubs, get into a hot shower to relieve the pain…and cry HARD. I cry til I can’t breathe. Then I pray. I ask G-d, “Why did you do this to me? Why did you do this to my kids who only want a normal life with a normal mother?” When he doesn’t answer, and my crying fit stops, I get out of the shower, dry off, and get into bed. Then I take something for pain and anxiety, lie down in my bed, and put on my iPod. And, I’m ashamed to admit, I wish for just a few minutes that maybe I won’t wake up. You see, I’ve been through many medications. And thus far, none have helped. Recently, I tried Enbrel, and I had cellulitis in my injection site. I was hospitalized for three days. So now the only treatment I’m receiving for my RA/SLE is prednisone 15 mg, and Plaquenil 400 mg. I’m stuck in this horrible flare (stiff, swollen, PAINFUL joints; sores in my mouth and nose; rashes; constant low grade fever; muscle aches and spasms…I could go on and on).

    Thoughts, feelings, emotions upon diagnosis: At first I really had no reaction. I was not surprised. I’ve always known something was wrong with me. When I was younger, I begged my parents to take me to the doctor because I was always sick and in pain. My fingers and toes started turning in before I was a teenager. I had kidney problems and chronic UTIs throughout my childhood. I was severely fatigued, and I felt like I had the flu constantly. I started having severe migraines at 12. My periods were irregular and I bled heavily and painfully. I started having seizures at 14. I was dismissed as a hypochondriac.

    I have two children of my own. I had no problems with my first pregnancy. However, three days after my son was born, I had a virus (high temp, sores in my mouth, enlarged lymph nodes, rash on my face and torso) that could not be explained. When I was pregnant with my daughter, I had to be induced a month early due to preeclampsia and acute renal failure. A week after her birth, I was stricken with mono. When she was 6 months old, I had a strep infection that quickly turned into meningitis. Years later, when I was a nursing student, in 2007, I had a TIA. In September of 2009 my son, who is schizophrenic, had a breakdown and had to be hospitalized. I had a breakdown of my own, but in a physical sense. I had the classic butterfly rash, lymph nodes so enlarged I could not breathe, oral and nasal ulcers, and I had a seizure even though I was medicated. I was taken to the ER where the ER doctor had the good sense to run an ANA titer, sed rate, etc. I was stabilized and sent home. Two days later, the ER doctor called me and said my ANA titers were “off the wall” and I needed to see a rheumatologist. I put it off until my son was well.

    In February of 2010 I couldn’t take it anymore, so I finally went to see a rheumatologist. Based on the ANA and other labs as well as my symptoms, I was diagnosed with RA and SLE. Again, I was not surprised. I’m a nurse, so I knew my symptoms resembled these disease. I was relieved that I was going to get treatment, though.

    My family was in denial when I told them. They thought it was no big deal. My grandfather and father were the only ones who took it seriously as my grandmother and her brother had it. Uncle Bob has just passed away, and my grandmother was only 62 when she died. My mother told me, “I know someone with lupus who lived to be 82. You’re not going to die. It’s nothing to be scared about.” My sister took it as an opportunity to ask me for narcs. They didn’t understand my pain. And they didn’t want to understand it. It made me so angry. When my younger brother goes to an appointment (he was in a quad accident 8 years ago) to follow up for the brain injury he had, my sister is all upset and on Facebook acting like he’s dying. I was just in the hospital…she didn’t even come see me or call me.

    BUT. I have a loving and supporting boyfriend who sticks by my side. If I need to rest, he takes over what needs to be done with the house and kids. I have good friends. My kids are wonderful. I’ve given up trying to convince my mom and sister to care. I think my mom finally got hit with reality, though, when she came to see me in the hospital the other day. I had the malar rash on my face, I was puffed up from steroids, and I was receiving Lovenox prophylactically to prevent DVT because the area on my thigh where I had cellulitis was so large.

    The way I feel NOW is depressed, angry, and IMPATIENT. I’m depressed because Enbrel was supposed to be a “wonder” drug. Not only didn’t it work, but it made me seriously ill. I’m angry for the same reason. I’m impatient because here I am stuck in a mega flare…and I can’t try any other drug until the infection has cleared, and it’s far from resolved.

    And…I think I’ve gone on and on long enough haha

  20. Happy (@HappyMECFS) says:

    * Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?

    I keep bottles of water and boxes of granola bars in my nightstand so I can eat and drink without getting out of bed. I’ve greatly lowered my standards of personal hygiene. I brush my teeth when I notice they’re icky, and my hair never gets combed. I always swore that when I got old I would never wear sweatpants out of the house unless I was going to the gym. I’m not old yet, but I do wear sweatpants on the rare occasions when I go out, and I go out to get the mail and answer the gate in my long nightshirt.

    * If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?

    I spent the six months between my falling ill and my diagnosis believing that all my symptoms were due to a relapse of depression that happened about the same time as the sinus infection that triggered the ME/CFS. I had had depression before, and I knew what to do to fix it. I did all those things, and the depression was gone, but the fatigue remained. I was blaming myself for not being able to defeat the depression this time, and kept making plans for returning to work that I couldn’t keep. I was so afraid that I had some new, drug resistant depression and that it was going to drag me into the dark pit again.

    When my GP finally gave me the ME/CFS diagnosis, everything suddenly clicked into place. There was a huge sense of relief, because I knew what I was facing, and that I could stop fighting the wrong war.

    Then I learned more about what ME/CFS meant, and I went through a lot of grieving, as I started coming to terms with what I’d lost. But at least I *knew* what was going on now. That was a huge help.

    * We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

    I’ve been through this book so many times, that it’s an old friend. I just like spending time with it. :)

  21. Shan says:

    My book is still on order. It take three weeks to get here in Hong Kong. I really want to join the discussions and will so soon. xo

  22. Amy Clifton says:

    Yes, keeping lists is so important for me too, not only to remember things but also to keep myself motivated. If I can do at least one thing on my list, I feel good about my day. Problem is, I have to remember to put even small things on the list, and have to remember to make the list in the first place! :-)

  23. Mindy K says:

    I forgot to answer the last question…silly me.
    What I hope to gain by reading this book: Obviously I have a lot of anger and depression over the limitations my illnesses have on my life, the yo-yo of remissions and relapses, and the effect it has on my children. I want to deal with these feelings and find some sort of peace. I’m tired of the emotional turmoil…being sick is bad enough.

  24. April says:

    Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?
    – Deep Belly Breathing from Yoga class… It keeps the stress level down and keeps me centered.
    – the key “ball” (rubber bands wrapped around the top of the key) to make it easier to turn)
    – my spoon ring I got last summer to remind me to try to always have a spare “spoon” (hi spoonies)
    – my time… I take breaks, sometimes walk across the street at work to the meditation garden… I be gentle with myself… most of the time

    If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?
    – devastated. I knew what RA hands could look like. I was terrified even though I KNEW things were different now… even though I understood my outcome wasn’t what everyone else was sure it was.
    – the irony was, I was diagnosed in December 2010. I was signed up for the Austin Half Marathon the following February and to start Yoga class in January. I did both… and both really helped. Yoga helped teach me… the half taught me even when it hurts like hell, I can do it.

    We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

    – new ways to look at my own journey… new ways to help me cope… and ways to help others on their journey…

  25. April says:

    Oh snap… I forgot about baths… YES YES YES… especially when my Raynauds is kicking my butt… my fingers and toes get so cold they hurt and nothing but sitting in a tubby of nice hot water (frequently with lavender scent) helps.

    Thank you for reminding me, Elizabeth!!!

  26. Mickey says:

    I like that last sentence, Susan. “…acceptance without giving in to the illness.” That’s the kind of balance I wish I could find. I alternate between fighting against it, which usually makes me sicker, and giving up altogether and just staying in bed. I’ve been sick since 1993 and I’m always telling myself that someday I will get well, but I know I won’t. I was attracted to Toni’s book because I had read one of her blog entries that made her sound so peaceful, accepting, but not beaten, and I wanted to find out how she came to that place. I’ts great to see so many here and read their stories.

  27. Linda P. says:

    How did I react to my diagnosis? My reaction was also my not-so-secret coping mechanism. I reacted with a great big dose of denial and optimism. Because I was living such a healthy lifestyle (jogging, biking, kayaking, weight lifting, vegan) before RAD slammed me into bed in a single day’s time, I had read much about curing diseases through natural means. I was going to find the trigger and cure myself through even healthier eating! I didn’t “do” medications, and even though I was sixty-one at the time, I hadn’t needed any of the usual medications we take as we age due to my efforts to keep myself healthy, so why wouldn’t it work for this, too? I didn’t read much about the progression of RAD, because I didn’t want to think too negatively, but I did tiptoe into some sites, learning as much as I thought I could deal with without it impacting my optimism. My rheumatologist, however, pointed out that with the high anti-CCP antibodies my bloodwork turned up, I was likely to have a more aggressive case and the literature I read on my own agreed with his summation. I have five grandchildren and I want to interact with them as much as I can. I ultimately decided that I would take a DMARD, but not prednisone nor pain medications, while I searched for my magic cure.

    I didn’t find that magic cure, of course, and I discovered Toni’s book about the time that I was coming to that realization that there wasn’t going to be a secret cure or a fast remission. I was facing the fact that my friends were disappearing when we weren’t able to attend functions or reciprocate by inviting them places. Just reading the opening sentences of the book made me feel less isolated, and I knew that I could trust what she had to say.

  28. Wren says:

    –Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?

    I cope in many ways, but they aren’t secret. First is self-distraction. I try to busy my mind with something other than the pain I’m feeling. Sometimes I do that by reading, sometimes by writing. When I was still working as an editor, I focused on the words and making the story read more smoothly. When I walked my dog while coping with a flare in my foot or knee, I’d push through the pain by counting cadence to myself or even singing an old kids’ song like “Row Row Row Your Boat” to myself as I walked. Physically, I use ice packs and heating pads, Tiger Balm, fingerless compression gloves and occasionally, splints.

    I also try to look for the many “gifts” the world presents us with each day, if we pay attention. For me, these include birds, breezes, the scent of evergreens, and my cat and dog friends. I try to stay alert.

    –what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis?

    I’d heard of arthritis, but I was only 31 years old when I was diagnosed. I thought only elderly people had that. I learned that the arthritis older people got was usually osteoarthritis and that what I had was rheumatoid arthritis. I was surprised, but not afraid. I thought my doctor would be able to help me with it.

    The surprise and dismay came gradually as I realized the drugs he gave me for my RA didn’t work. I didn’t get scared then, either, but I think it was because I consciously tried not to think too far ahead. Instead I was determined to live one day at a time–another way of interpreting living in the “now.”

    –What do you hope to achieve by reading this book?

    I hope to learn more and new ways to cope more gracefully with my rheumatoid disease. While it’s only moderately painful and disabling right now, I’m aware that could change tomorrow. I like the practicality and gentle realism of Buddhism, and I think Toni does an excellent job of explaining it.

  29. Elizabeth Bastos says:

    I really like that, Wren: self distraction and looking for the many gifts that the day brings. It is the small things that I cling to – sunsets, for instance. Although I guess that is a big thing. I’m trying to I practice “phenomenology” which is just taking things in, not judging them, not saying this is good this is bad, but this is this.

  30. Toni Bernhard says:

    Joan – I hope the book helps you along on the path to acceptance. It’s an ongoing practice for me. I’m beginning to realize that I really wrote the book for myself — to remind me of practices to help me accept that I’m sick and may never recover. I can’t believe that the book is now out there in the world helping so many other people! But, that’s beside the fact. What I really wanted to share is that I think I wrote the book for myself because acceptance is an ongoing practice for me, too, and I need reminders!

  31. Toni Bernhard says:

    Hi Kat – This is such wonderful feedback for me to hear. I’m just so grateful that the book was helpful to you and to the others who’ve read it. It lifts me up every time I hear about it!

  32. Toni Bernhard says:

    Connie – This is so wonderful to hear — that the book has been life-changing for you. As I said in another comment, I had no idea when I wrote it that it would have this effect out there in the world. I really wrote it to remind myself of what to do every single day to try and live in peace and equanimity with the life I have.

  33. Toni Bernhard says:

    Sherry – I hope that the discussions in the book on impermanence and on learning to question our stressful thoughts will help you to be able to treat a flare as a flare and not a permanent change. This is not to say that a flare isn’t terrible to cope with when it’s happening, but it can help so much to manage it if we can keep our minds from spinning out stressful stories about how this is how we’ll be now and forever!

  34. Toni Bernhard says:

    Mindy – You hit on the heart of the book — to not try to add emotional turmoil to the physical suffering we have to endure every day. One of those two is enough! I’m so glad that your boyfriend and kids are supportive. They clearly want to be there for you and don’t think of it as a burden. I hope with all my heart that my book is helpful to you.

  35. Toni Bernhard says:

    April – I’m so glad that you see being gentle with yourself as a top priority. I’ve been thinking lately that one of the few things we control in life is how we treat ourselves…and how I see no reason not to always treat ourselves as kindly as we’d treat our loved-ones.

  36. Toni Bernhard says:

    Linda – I’m so glad to hear that you’ve found my book to be helpful. I spent so much time looking for the magic cure too and I have to admit that I still am. The difference is that “a cure” is no longer what my life is about. When I let go of that line of thinking — “I have to find THE cure. There is a cure and just need to find it” etc. etc. — that’s when I started living again. At least, that’s how it felt to me — as if I was given my life back.

  37. Toni Bernhard says:

    Wren – I’ve learned to look for the little gifts in life too. I spent years in this house when I was well without realizing many of its little joys — even the lovely view out of my bedroom window. I’m so glad you’ve discovered this too.

  38. Nancy Aurand-Humpf says:

    Gosh it helps so much to hear all your stories. I’m sorry that we all suffer so. I too, hope for more peace and acceptance. I also hope ease my anger a bit, because that is my big problem. Aside from suffering from near daily migraines and FMS, I am also the primary caregiver for my 26 year old daughter who is severely mentally and physically disabled. I want to be able to help her enjoy her days. I’d like to be able to take her out when she says “I hate this house”, but most of the time I can’t. I feel so much grief for her. She wants to do all the things she sees other kids her age do, like drive the car. She demands “why?”and I stumble to find an answer that won’t add to her suffering. It breaks my heart. As for me, my heart feels broken too. I am an artist who put my career plans on hold to raise my daughter, and now that I have more time, I’m sick. I feel selfish too be mad and I don’t really know what to do about it. I’m haunted by all the empty and unfinished canvases stashed behind furniture in my house. Lots of dashed dreams I’m grieving over I guess.

  39. Jay S says:

    Shan, can you buy the kindle edition and read it on your computer now? I can read my kindle books on my computer, my tablet and my kindle. I don’t want anyone to miss out!

  40. April says:

    You know… the more I meet myself on the yoga mat… the more I learn that yoga isn’t about putting your left big toe in your right ear and your right elbow on your nose the more I realize that my journey right now IS about being gentle with myself. Pushing myself to the edge of my limits sometimes… but knowing when to stop and back of just a big.

    Some days it is all about legs up the wall and pranayama, some days warrior 1 and warrior 2… in all things mindfulness…

  41. Nancy Aurand-Humpf says:

    Ah, mindfulness? When I’m present, I delight in gazing at the bare branches of the tree outside my bedroom window. Sometimes a sparrow stops by. When I’m lost in wishing things were different, I just draw the curtains, lie there and forget.

    It is wise to be kind, thanks April

  42. Kat Radi says:

    Thank you RA guy and mombeenthere for sharing your thoughts about wishing you had a terminal rather than chronic illness. In my darkest times I also wish this was the case, however would never dare to utter it aloud or share with anyone. I would dwell on it and be consumed by the supposed ease of it. Then I would be racked by guilt as I imagined myself trying to explain it to someone whos death was imminent, and then I would feel despair. Now I have learned that this is just life. there is nothing wrong with it.
    so I thank you again. thanks for saying what I didn’t dare to. x

  43. Leslie says:

    Secret coping mechanisms? Not too secret I think. Heat, cold, lately I have been trying to cut back on my schedule – I need so much more rest. I am soooo tired. I know I haven’t come clean with my family and friends about how much my stamina and strength have declined. I try to avoid situations that would reveal that. So, yes, I guess that is secret or at least I have tried to keep it so. I’m not sure why. It seems like a failure on my part somehow, but I know it is a result of the disease.

    When I received my diagnosis, I was relieved and not terribly surprised. I had been seeing a rheumatologist for a year who kept insisting, without xrays and in spite of continued and spreading swelling and pain in multiple joints that came on in weeks (not years)that I had osteoarthritis – because I was seronegative and because of my age – 56. I finally sought a second opinion. This rheumatologist did do xrays and diagnosed rheumatoid arthritis and now on a DMARD my symptoms are much more controlled. It’s a process, and I’m not like I was before, and maybe I never will be, but he understands and believes my pain and treats it and doesn’t dismiss me as a whiner.

    I’m hoping that the Buddist philosophy can help me learn to be more accepting of those things I cannot change. There has been a sea change in my life as a result of this disease. Anger, anxiety, hoplessness, fear, lonliness – a host of negative feelings and emotions can well up when you face a future with new uncertainty, pain and change you didn’t ask for. None of these emotions are healthy or helpful. It’s better to learn a way towards a positive attitude. I always feel better when I can calm my mind and accept the present and accept the gift of the present. I am hopeful that this book can help me to find that path since often it seems hidden to us when we are in pain or are fearful.

  44. RA Guy says:

    I really like you idea about thinking of each different room of the house as a different specialized area…I remember years back, when I was struggling quite a bit, my goal one day was to just get from my bedroom to the living room. Of course, once I got there I just fell into the sofa and went back to sleep…but it meant the world to me, to be able to move to a different part of the house.

  45. RA Guy says:

    Putting things that inspire you in one place is a great idea. I sort of have the same thing, but spread around my house. Some days, gazing into the crystals of a piece of polished amber that I keep next to my desk really helps me to relax, and focus on something other than the pain.

  46. RA Guy says:

    ” I also try to look for the many “gifts” the world presents us with each day, if we pay attention. For me, these include birds, breezes, the scent of evergreens, and my cat and dog friends. I try to stay alert.” RA has given me this new found sense of awareness as well; it’s a wonderful gift indeed. There’s a family of hummingbirds that visit my garden everyday; even when I don’t peek out the window I can still hear their chirping.

  47. Toni Bernhard says:

    Nancy — Please don’t think of yourself as being selfish just because you’re mad and angry. Your situation is so incredibly hard — a double set of responsibilities of being sick yourself and being a caregiver. And then, add to that who you’re caregiving for: your own daughter for whom you have so much love that all you want is for her to be happy. No wonder you are overwhelmed and struggling with anger and disappointment. I hope you’ll start by being kind to yourself and recognizing just how courageous you are to be taking care of your daughter, trying your hardest to make her life a good one, AND caring for yourself. That is a very full plate. I hope you’ll take some of those compassion phrases from the book, alter them to fit your situation and say them to yourself as kindly and gently as you can, even if it’s just taking an understanding stance toward your anger: “It’s so hard to be taking care of myself and my daughter at the same time. No wonder I get angry sometimes.”

    And remember that things may feel stalled right now for you, but that the law of impermanence may turn out to be your good friend! There’s every reason to think there are some positive changes around the corner…surprises you don’t know about yet.

  48. M. Allport says:

    I have several coping mechanisms that I use every day. I get up and move whether I feel like it or not. When my body says I am tired, instead of getting angry and frustrated – I use the opportunity to relax and have a cup of tea and maybe a short nap. I embrace the chance to get away from the hustle and bustle of everyday life – a welcome break. I think the world would be a better place if EVERYONE recognized the chance to get away and relax for just a minute. I also try to stay positive. I can’t do this right now, but maybe in a couple of hours I will be able to do it.

  49. Jenny says:

    1. Do you have any secret coping mechanisms that you use regularly, in order to make it through your day?

    I don’t have any secret coping mechanisms anymore, but I used to have some when I was still working. My bladder condition, interstitial cystitis, causes a lot of urinary tract burning after voiding. It helps to put ice on the area, but I didn’t feel comfortable doing that at work. Sometimes I would just get a bottle of cold water and “hold” it between my legs. Other times I would place an ice pack between my legs but throw my coat over my lap so no one could see.

    2. If you have received a diagnosis for your chronic illness, what were your thoughts, feelings and emotions, immediately upon and in the few days after receiving your diagnosis? If you have not yet received a diagnosis, how does this make you feel?

    When I got the chronic fatigue syndrome diagnosis, I immediately thought, “No. Not this. Anything but this.” I had already done some research before going to the doctor to figure out what was wrong with me and knew CFS was a possibility. I also knew it wasn’t well understood, had no cure, and was thought of by some in the medical community to be psychological in nature. I felt like I’d rather have cancer than such an amorphous disease.

    The next few days were filled with despair and fear. The more I read about CFS, the more I realized how bleak it can be because there is no treatment universally found to be helpful. I also felt shame upon having to tell my friends and family. I felt like what I was really telling them was that the doctor couldn’t find anything wrong, which is essentially how they diagnose CFS. Additionally, to me the name of the illness did nothing to impart to people just how sick I felt. I felt like it marginalized my symptoms.

    3. We have finished reading the biographical section of this book, and are moving into the ‘guide’ part of the book, which details various ideas and practices. What do you hope to achieve by reading this book?

    I hope I find a way to live in acceptance of my condition and still find joy in my life. While I try to work on this already, I still feel like I easily get stuck in the negative aspects of my new life as a sick person. I hope this book offers practices to help me cultivate gratitude and joy.

  50. Toni Bernhard says:

    Hi Leslie,

    I know about those painful emotions—anger, anxiety, hopelessness…and all the rest. I struggled with them when I first got sick. What I’ve learned is that what matters to our ability to cope with chronic illness is not whether those emotions arise, but how we react to them when they do. I hope my book can help with that.

  51. RA Guy says:

    Reaching that point where I learned that I couldn’t control what was happening to my body, but that I could control my reaction to what was happening to my body, was a huge step forward for me. I have a close family member who offered me this exact advice for years…it didn’t sink in immediately, but once it did, I realized that there was actually much more than I imagined still within my control.

  52. Toni Bernhard says:

    Jenny – We have so much in common. I suffer from IC too, although I don’t discuss it in the book because it’s been mostly in remission since I got CFS, so I don’t think about it a lot. But when it was bad, it was just so hard to deal with. Funny that you use ice in that area because I used a hot pad!

    And I felt the same way about the CFS diagnosis — like it was embarrassing. No one should have to feel that way, but unfortunately, that’s what happens, given the name of the illness. I hope that changes soon.

    I hope you find some tools and practices to help in my book.

  53. Christina says:

    I was diagnosed 13 months ago, and I still have trouble believing it. Sometimes I just don’t believe I have RA, even though I’m on disability! My brain plays little tricks, like thinking it will turn out not to be RA. This is extremely unlikely, because of my anti-CCP antibody status, which is something like 97% indicative of RA.

    Maybe it’s partly because I was first (mis)diagnosed as having Reactive Arthritis, which is usually a shorter term disease (less than a year). The Rheumatologist kept telling me how lucky I was not to have RA, how horrible the RA drugs are, etc. Then he finally decided to test me for RA and the rest is history. But maybe his repeated comments about how lucky I was not to have RA have contributed to my brain’s denial tricks.

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