24 July 2011 ~ 10 Comments

Interview with Toni Bernhard, Author of How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers

In 2001, Toni Bernhard was struck down by a mysterious virus during a trip to Paris. She never recovered. She now suffers from what she herself describes in her book as “the symptoms accompanying a severe flu, including the dazed sick feeling and low-grade headache, but without the fever, the sore throat and the cough. To imagine it, multiply the extreme fatigue of a flu by an order of magnitude. Add in a heart pounding with the kind of wired, oppressive fatigue that healthy people associate with severe jet lag, making it hard to concentrate or even watch TV – let alone to nap or even sleep at night.” Despite this, she manages to inspire people by imparting her wise advice on how to deal with illness, which is mainly based on tenets of the Buddhist faith. Toni has been a practicing Buddhist since 1992. In this article, Toni has kindly agreed to let me interview her.

 

Sarah: Buddhist teaching refers to a lot of different stages. Can you please tell the readers about the stages you went through when you first fell ill and how you managed to take control of how you feel and react to being chronically ill?

Toni:  When people get chronically ill, they usually go through the four stages of grieving that apply when we’ve lost a loved-one: denial, anger, depression or sadness, and acceptance. I was stuck in stages 1-3 for many years. I think the grounding that I had in Buddhism before I got sick helped me to finally reach acceptance. That was the point at which I began to think about writing How to Be Sick.

 

Sarah: On the topic of reactions, how do you deal with the ignorant (and sometimes hurtful) comments and attitudes of people who do not understand your illness?

Toni: I used to be stung to the core when people didn’t understand. But I slowly realized that this reaction only increased my suffering. So now I try to see those comments as reflecting their ignorance and I don’t take them personally. People are rarely being intentionally mean, even when their comments are hurtful. They just don’t understand the difficulties of chronic illness. After doing a radio interview about my illness, I did encounter someone who was being intentionally mean. He went to my website and got my email address and sent me a nasty note calling me an “a motivational slacker” (whatever that is!). Even though I’d come a long way in not taking ignorant remarks personally, I felt terrible and hurt. But I had my own book to turn to for help! I realized that this was said out of ignorance, that he must have been suffering greatly to want to be mean to me like this, and that it only increased my suffering to internalize it. So, instead, I sent compassion to him over his suffering. I tell this story, partly to let readers know that I still have difficulties and have to remind myself of the practices in the book that could be helpful at the moment! Yes, I wrote the book, but I’m still a work in progress.

 

Sarah: On the topic of loneliness (or solitude, “the positive loneliness”), how do you deal with this without falling into the depths of depression? I believe this is something with which so many of us chronically ill people can identify, as we have all lost friends or had to deal with people’s hurtful reactions to our suffering. In addition, many of us have had to forego attending social events because we just don’t feel well enough.

Toni:  A big portion of the book is devoted to just this subject. I talk about it in several chapters because it was my biggest challenge — learning to spend so much time by myself. But I’ve come to love the solitude. As with everything else, it starts with accepting your life as it is — not fighting against what you can’t change. That opens the door just a little to seeing what you might find in this new life. I wrote about solitude in a recent blog post at Psychology Today. I’ll include the link in case people would like to see it: http://www.psychologytoday.com/blog/turning-straw-gold/201105/how-turn-loneliness-sweet-solitude

As for friends whom I lost, when I learned to forgive them, I experienced such a tremendous relief. I didn’t realize how much mental suffering was being caused by my resentment and anger toward them when, in reality, they wished me the best even if they didn’t hang around. Some people are just uncomfortable around illness. Others may develop problems in their own lives and not have the time to come and visit. I just let all of that bitterness go. It was so freeing.

 

Sarah: You mention your beautiful hound dog Rusty in your book. A lot of chronically ill people feel that their pets have really helped them to get through tough times. Would you agree?

Toni:  Yes, I agree. He accepts me as I am. He doesn’t even think of me as sick! I’m whole to him and that makes me feel whole.

 

Sarah: I like that you mentioned dealing with insurance companies in your book. My insurance company have mostly been particularly nasty and heartless whenever I call them up, which either ends with me putting down the receiver and bursting into tears or having a fit of rage (albeit not to the insurance company themselves). What was the most frustrating situation you had to deal with with your insurance company and how did you manage to keep calm and not lose your cool?

Toni:  The most frustrating encounter I had with my insurance company was trying to get approval for an off-label use of an anti-viral. Let me share my strategy in dealing with any bureaucracy. I’m always calm and nice to people on the phone. Otherwise, they get defensive and it becomes hard to communicate. They just get out the “rules” sheet and stick by it. But if I remain polite and, in effect, “put myself at their mercy,” more often than not, they try to find a way to help. Many of the people we get on the phone when we first call have very little power to bend the rules. Getting angry at them is like hitting our heads against the wall. But I’ve found that if I’m polite and calm, they’ll find a way to help, or, if they can’t, have me talk to their supervisor. [Sarah: I couldn’t agree more here, although despite being polite and calm with authorities (and insurance companies) here in Germany, I’m afraid I can’t always report the same success, so I guess it also depends on the individual you are dealing with. Some people are unpleasant through and through even when you are nice to them. I have been patronized, had to endure racist comments and been accused of lying by my insurance company.]

 

Sarah: What inspired you to write your book in the first place? How did you motivate yourself to keep going despite your acute and persistent exhaustion?

Toni:  I had a longstanding Buddhist practice before I got sick. Buddhism is a very practical path. Like many others, I don’t consider it to be a religion. It’s a path of learning to cultivate kindness and compassion and contentment toward ourselves as well as others (and in this way has the same values as all spiritual and religious traditions). Buddhist practices helped me move to that last stage in the grieving process — to acceptance — and, when that happened, I wanted to help others. That’s why I wrote the book. As I talk about in the book, it wasn’t easy. There were times I felt too sick to finish it. But I wrote when I could and, from the bed, completed it. Then to my utter shock and delight, a publisher took it on!

 

Sarah: In your book, you describe your husband Tony as an excellent caregiver. We often tend to focus on the burden of the sick whilst forgetting the burden of the caregiver. What are the problems that caregivers tend to encounter and what advice would you give to a caregiver who is feeling overwhelmed?

Toni:  Caregivers are unsung heroes in my opinion. There are many online sites that caregivers can turn to for support. On my website for the book, under the link “Chronic Illness: Helpful Links”, I’ve included links to several of them. Caregiver burnout is a major problem. Caregivers need to learn to ask for help. Most people want to help; they just need to be asked. There’s a whole section at the end of the book on caregiver burnout and the many practices that can help with it. I can’t list them all here, but I’m so glad you raise that as an issue.

 

Sarah: How do you deal with disappointment – disappointment that a new doctor turned out to be uncaring, rude or even unhelpful; disappointment that a “promising” new treatment didn’t work after all?

Toni:  It’s still a challenge to deal with disappointment. But I’ve learned that the most important thing is to take care of my mental wellbeing and so I deal with disappointment by talking kindly to myself. It’s the opposite of negative self-talk or that inner critic that we all know so well. It felt awkward to do at first, but now it’s very natural and is so soothing. I might say, “It’s so hard to be disappointed by yet another doctor” and I might pet my arm with the hand of the other arm as I do this. We can’t be too nice and kind to ourselves! It’s the least we can do to help support our poor sick bodies.

 

Sarah: Looking to the future, do you believe your condition will ever change? Do you plan to bring out another book?

Toni:  I always hold out hope that a new treatment will help or that I’ll just spontaneously recover my health! As for the future, right now I’m concentrating on writing some short pieces for Psychology Today. Maybe one day I’ll have enough good ones that I can gather them into a new book!

 

Sarah: Last but not least, you talk a lot about how fulfilling online friendships have been for you? For those readers who would like to get to know you and your work better, how can they find you?

Toni: People can find me at the Facebook page for my book. Just enter “How To Be Sick” into a search. Or people can go to my website and use the “Contact Toni” link.

 

Sarah: Thank you so much, Toni, for so kindly and generously donating of your time to help others! I wish you and your family the very best for the future!

10 Responses to “Interview with Toni Bernhard, Author of How To Be Sick: A Buddhist-Inspired Guide for the Chronically Ill and Their Caregivers”

  1. Jenny Lalov 24 July 2011 at 5:04 pm Permalink

    This is so honest and so beautiful. Toni is a vessel from above. Information has been sent to us on earth through her and she is an angel.
    I love you, Toni for your work!

    • Sarah Downing 24 July 2011 at 5:08 pm Permalink

      Thank you very much, Jenny. Toni is indeed an inspiration and I’m very grateful to her for sharing this information with us all:-).

  2. anita 24 July 2011 at 6:02 pm Permalink

    toni, what a great piece of writing. having chronic illness, i can totally identify with this one. i second your recommendation of calmness and cooperation when dealing with insurance and other’s. it doesn’t always work, but more often than not it gets a positive result, esp here in the US.

    i find it interesting that different people tend to have different abilities to accept and rise above the depression and ennui that illness brings. i find that setting my mind towards positivity and gratitude have helped tremendously. as has my husband. bravo to the unsung heros who care for us with love!

    • Sarah Downing 24 July 2011 at 6:12 pm Permalink

      Hey Anita,

      Thanks for commenting. I am sure it is easier to get positive results in the US when you are calm and polite to people. Corey commented that there is more of a service mentality there, whereas here in Germany people don’t always feel obliged to be polite or helpful even if you are paying for a service. It frustrates me no end and of course I always try to be polite (because that is the norm for me anyway), but sometimes people are rude regardless and it leaves me feeling frustrated, upset and helpless. I know I’m not alone here (because it’s something Germans and other expats comment on constantly) and unfortunately for me (and Corey) personally it’s not really the case that more often than not we end up with positive results in Germany because dealing with authorities here is too often a struggle and a nightmare and I’m convinced it doesn’t have anything to do with us being pissy because we’re just not.

      When people are like that, I am really not sure how I am supposed to deal with it. My insurance company exhausts me because of their abusive and rude attitude and of course I can’t easily switch because I already have a pre-existing condition (thank God I only have to deal with this until the end of the year). But you know how different it can be in different countries, having lived abroad yourself. I have never gone into details about all the struggles I have had over the years with my insurance company because it exhausts me too much to think about it, but despite being firm, polite and civil, it often feels like I’m banging my head against a wall. One example is the fact that my insurance contract specifically covers chiropractic, but every time I submitted a chiropractic bill I was told that it was not medically necessary despite around 4 medical professionals confirming that I do need it because I am in pain. Their ultimate response was that it wasn’t medically necessary because chiropractic itself isn’t medically proven – so why the hell then do they cover it??? I had a similar case with osteopathy – they bitched about paying for that too. It’s got to the point where I dread hearing from them. I had a similar case when I switched to Natural Desiccated Thyroid – they wouldn’t pay and do you know why? It was because they claimed that NDT is not medically proven despite the fact that it’s been used for over a century. Then when I told them I wanted to go to psychotherapy because I was feeling depressed after the loss of several family members, I mentioned that I would like to do it in my native language English (there are some people who offer that here in Düsseldorf), but the lady commented that I would have to accept that I am in Germany, so should do it in German (despite the fact that 25% of each session would have been paid by me anyway. I’m sure I’m not the only non-Germany policyholder of theirs). One time I was also accused of trying to trick my insurance. Those are just a few examples, but hopefully that gives you the impression of how horrific it can be here sometimes. And that’s just my insurance company – both Corey and I have come across rudeness from various service people. Sometimes I feel like I need the patience of a saint and God do I try, but I am not super-human and it’s nowhere near like it is in the US or the UK. Germany is very, very different in this respect. I’m mentioning all this because I wanted to provide some perspective for my comment on this part of the article. Yes, I agree with Toni, but I also wanted to point out that it really does depend who you are dealing with and where. Thankfully, not everybody is like the people I described above, but we still encounter people like that here more often than I would like. People in the service industry here sometimes get away with things that they would not get away with in the US or the UK because if they did these things in those countries, they would risk losing their jobs.

      I also know Dean has been a great support for you. I’m very glad that you have him. I’m very lucky to have Corey too. In fact, we are lucky to have each other!

      Love,

      Sarah

  3. Lori 25 July 2011 at 2:44 am Permalink

    Great article, Toni! I can relate to much of what you say. I think it helps people to know it’s normal and okay to grieve. Fortunately for me, I learned that lesson before I became ill. I was a facilitator for several years (before I became ill) for a support group. It was for friends & family dealing with a loved one with chronic mental illness. There was a lot of grieving going on but there were many people who felt guilty about it because they were not the person with the illness, but once they realized it was okay to grieve and that it happens to everyone, things became easier to manage. Some would get ‘stuck’ in the process for a while but I used to say, the important thing is not how long it takes each person, but that we move through it. Illness is difficult for all involved.

    I really like your idea of talking kindly to ourselves. We could all use more kindness!

    • Sarah Downing 25 July 2011 at 2:47 am Permalink

      Hey Lori,

      Thanks for commenting. Like Toni, it sounds like you also had prior experience that enabled you to deal with your diagnosis much more easily. I have always known you to be a very caring person, so it doesn’t surprise me that you worked with a support group.

      Love,

      Sarah

  4. Linda 4 August 2011 at 5:49 am Permalink

    Elisabeth Kübler Ross talks about the four stages of grieving as well. which is true, people go through a difficult situation, doesn’t have to be a loss of a loved one, and they experience all 4 stages of dealing with it.

    • Sarah Downing 4 August 2011 at 5:51 am Permalink

      The name rings a bell, Linda. I know it’s a very popular concept and it makes so much sense that we would also go through this when we are sick. We tend to greave our last health, but in turn we can celebrate if and when it returns.

      Love,

      Sarah

  5. Jan 18 August 2011 at 1:05 am Permalink

    Dearest Toni and Sarah,

    You are making a profound impact in this world.. thankyou so much for the insights and encouragement you both give to all of us.

    I intend to read Toni’s book some day soon. I love the way she expresses concepts and is such a caring person. Its wonderful that she is writing for PT (Psychology Today). 🙂

    Best to you both!
    Jan x

    • Sarah Downing 18 August 2011 at 12:55 pm Permalink

      Thank you very much, Jan. You too are making a great impact and I am happy to know you:-).

      Toni is indeed very caring and I’m happy to have met her too. The book is a very interesting read.

      Love,

      Sarah


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