"Sick Upon Sick": Handling Sickness When You're Already Chronically Ill

Early on in our lives, we learn that being sick is no fun. When we're kids, being sick feels bad and it means we don't get to play or go to a birthday party. When we get a bit older, being sick becomes even more burdensome because it means we can't get our homework done or we have to miss work. But for me, it wasn't until I became a parent that being sick took on even greater significance.

As the mother of an infant, being sick meant that I wasn't sure I would be able to take care of my daughter. And that terrified me. I was already sleep deprived and feeling lost as to how I was supposed take care of a little human life. The addition of a fever or an infection made me realize that my own health felt like a secondary concern compared to what my other responsibilities were. I couldn't not feed my daughter just because I had a fever. She still needed me to change her diaper or put on her jacket.

And during periods of severe depression, the worry about how my own mental illness was affecting my daughter compounded the confusion, guilt, and anxiety I had always felt. 

For my mother, getting an additional illness on top of her chronic illness is hard to cope with. She calls it, "sick upon sick." I often wondered, how a person who already feels sick all the time feels when they are more sick. 

For people who are generally healthy, getting something like a cold can be an annoyance. But if you are already so sick that you can't leave your house, how does the effect of a cold or a fever impact you? 

Here are some questions I asked my mom about this.


Because of how limited you already are, do you worry about your current illness getting worse, or getting a new illness, or becoming injured?

It's not that I sit around and worry every day that something else will happen. But if you ask me and I think about it, I have to say that I do worry. Not so much about my original illness getting worse because it's been almost 16 years and so I feel as if it's settled into what it's going to be. But I do worry about the last two things you mentioned. 

And I did in fact get a serious additional illness, on top of the original one—breast cancer. I'd been chronically ill for 13 years when I was diagnosed and it's become an ongoing additional health issue for me. The medications I've been given to prevent a re-occurrence have side effects that I have a lot of trouble with, and we think it may be because of my preexisting illness. In fact, one of the side-effects is that the medication exacerbates the symptoms of that illness. So yeah, it's been hard.

I also worry that something will happen and I'll have to be hospitalized. Part of my concern about that comes from reading other people's experiences about how doctors and other hospital staff seem not to understand that a person can be very sick but look fine. So I have a plan that if I'm ever hospitalized, I'll have the doctors get in touch with my primary care doctor so that he can explain my illness and how it might impact or be impacted by various treatments. Actually, this is what my primary doctor told me to do since many people in the medical profession don't understand Chronic Fatigue Syndrome (now called Myalgic Encephalomyelitis or ME/CFS).

When I got breast cancer, the doctors and medical staff were fantastic except for one thing. Only one of them acted as if my chronic illness was relevant. It was the anesthesiologist, and he asked me a bunch of questions about it but only because he happened to know someone who has ME/CFS.

At some point you broke your ankle. How did you handle that?

Ah, yes, that was my experience with an injury being a kind of "sick upon sick." I write about it in my first book, How to Be Sick. My husband was out of town, so I was on my own. If I hadn't already been sick, I would have gone to the doctor right away. Instead, after I tripped down the step and knew something was terribly wrong with my ankle, I crawled to my bed, pulled my laptop over, and looked on the internet. It said that if I couldn't walk on it the next day it was probably broken. So I waited and spent the day crawling everywhere I needed to go.

When I couldn't walk on it the next morning, I called a friend. He took me to my doctor who had me get an x-ray and then put a cast on it. The healing was a lengthy process. My doctor arranged for a physical therapist to come to the house for several weeks. He also wanted me to see an orthopedist so I had to do that. He ordered his own set of x-rays and then put on a different kind of cast. 

The whole experience was way outside the zone of what I'm comfortably able to do, given my chronic illness. So although it was only a broken ankle, it exacerbated the ME/CFS for weeks. So yeah, that was an injury that made my chronic illness worse because it forced me to be more active than I'm able to be. 

What's the worst thing about being "sick upon sick"?

When I think of "sick upon sick," I tend to think about a cold or the flu, not something like breast cancer. I'll answer your question based on those first two—what I call acute illnesses. The worst thing about getting an acute illness is the effect it has on my sleep. The single most important thing that determines how I'm going to feel on any given day is how well I slept the night before. I can sleep well and still feel lousy, but if I sleep poorly, I always have a rough day ahead of me. When I'm sick upon sick, like most people, I don't sleep well. For someone who's otherwise healthy, it's no big deal. But for me, it makes my ongoing illness worse.

A close second to sleep is the emotional impact. It's hard enough feeling sick all the time, so having an acute illness is like a second blow. I have to remind myself to use the practices I teach other people—that everything is impermanent and will pass, like the a rain storm; that I still have blessings to count; that life always has it's ups and downs and this is simply one of those downs. Those kind of things.

Oh, there's one other thing and that's that often the medications I'm given for something acute can exacerbate the ME/CFS. That's tough. For example, I suffer from chronic bladder infections. When they come on, it's terribly painful until the antibiotics start to work. I do have a prescribed pain medication I can take, but it makes my chronic illness much worse for some reason. So there's always this dilemma that medications that help with an acute illness may make my chronic illness worse.

What advice would you give people who have become "sick upon sick"? 

I would advise them to remember that healthy people come down with colds and the flu too. It's not reasonable to expect that because you already have a chronic illness, you won't get something on top of it. So, don't think of yourself as having been singled out for bad treatment in life. Illness—and injuries too—are a natural part of the human life cycle. So, recognize that and don't blame yourself for what's happened.

I'd also say that if you get an acute illness, pamper yourself. The law of impermanence will be your friend here, because the acute illness will go away. In the meantime be as nice to yourself as you can.

Have you ever worried that an acute illness will turn into a chronic one? 

I have but, you know, some people who are healthy have told me that they worry about that too. When an acute illness makes my chronic illness worse, I do sometimes worry that I won't get back to what I call my baseline; but I always have. Even though that baseline isn't very high, it's still my baseline. It's what I've come to know and accept.

Is there anything positive you can think of about being "sick upon sick"?

It's hard to think of positive things. There is this crazy positive thing that some doctors have mentioned. We think my chronic illness is caused by an immune system dysfunction of some kind—that my immune system is upregulated, meaning that it's overactive. And so, there's always this hope that some kind of traumatic event to my health could reset my immune system—like restarting a computer. Unfortunately, doctors don't know how to do that with the immune system. My doctor and I joke about it sometimes, but we're actually serious. We even shared that both of us were hoping that maybe the radiation I got for the breast cancer would re-set my immune system. It didn't. But I guess this shows that there's a potential positive aspect to everything.

When you've recovered from an acute illness do you ever think, "Wow, I'm not as sick as I could be"? That would be a positive.

I guess that does happen. It certainly happened with the breast cancer. It took me nine months to recover from the six weeks of radiation treatment. It gave me extra fatigue to the point where I was having trouble functioning. So when that extra fatigue cleared up, I did feel relieved not to be as sick as I could be—to be more like my "old sick self" as I sometimes call it.

This doesn't directly relate to your question about an acute illness, but I do hear from people who say that they're glad they became chronically ill because it forced them to live a more relaxed and slow lifestyle. But I hear from just as many people who feel trapped and miserable due to pain and illness. It's nice to know, though, that there are some people who have found positives in it.

I tend to say to myself, "This isn't what I chose and I wish I weren't sick, but I'm going to make the best of it because this is the life I have."

From Toni: A Short History of My Life Before Chronic Illness

When big events happen in our lives, it's easy to forget that there was life before we were married, or before we had kids, or before we got into an accident.

When you meet my mother it's hard to believe that she has ever been anything other than the loving, gentle, adult person that she is now. If you met her after she became ill, then it might not occur to you that she was once a high-powered professional, working in a high stress environment as the dean of students at a law school and as a law professor.

But as is the case with everyone, the life experiences we accumulate form who we are. They become the roadmap that guides our future decisions. 

So here's a piece my mom wrote about her early life. She has written extensively about the years when she became ill. But this is the first time she is writing about some of the critical events from her formative years. 

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Thanks for this idea, Mara. It's certainly been odd for me to write about my life before I became ill, but I've enjoyed it a lot.

I’ll start with my father. I always start with him because he was one of the great joys of my life...and one of its great sorrows. When he was an infant, his family fled modern-day Ukraine to escape the pogroms (government organized or condoned anti-semitic riots in which thousands of Jews were killed). 

He grew up in a poor area of Los Angeles. He didn't have money to go to college so he started a business and became very successful. He and his sister, my Aunt Jen, opened one, then two, then three, then four upscale gift shops throughout the Los Angeles area. As a little girl, it didn't seem like anything out of the ordinary to me, but looking back, it was an impressive accomplishment.

Their offices were on the second floor of the store on Hollywood Blvd. This was when the boulevard was still glamorous. As a young child, I’d go to work with my dad when school was out. He’d give me “grown-up” things to do in the store. Then we’d go to our favorite lunch place and always order the same thing: a hamburger and a vanilla milkshake for each of us. Afterward, I’d spend time on my own walking up and down Hollywood Blvd. I wasn’t even 10 years old, but it was completely safe.

My dad was always fun to be with, whether I was going to work with him, or watching him in his little backyard carpentry shop, or just hanging out together. He was soft spoken and gentle. I have not one memory of his being unkind to me.

Then, suddenly, my world fell apart. My dad got leukemia and died within six months. I was 10 years old. I mourn that loss to this day, although I’ve come to terms with it in the sense that I’m able to see our life together as a complete life, even though a short one.

My mother tried to take my dad's place in the gift shop business, but it was too hard. (They were an interesting match: my dad with his high school diploma and my mom with an M.A from Stanford—a rarity for women at that time.) The strain of raising two children on her own, running four stores in different locations across the L.A. area, and having my domineering aunt as a business partner was too much for my mom. 

She told me about the day she decided she had to get out of the business. She was driving home from Hollywood to West L.A. where we lived. She was so tense and exhausted that she suddenly found herself driving on the wrong side of the road. That was it. She told my aunt she was finished, and they sold the business. The result was that we became downwardly mobile instead of continuing the upward climb we'd been on due to my dad's success in business. While our family friends moved to more upscale neighborhoods, we moved to a more modest one.

My junior and high school years were not happy ones. I missed my dad all the time, and I was embarrassed because I was the kid whose parent had died. I felt guilty about that embarrassment because it contained an element of anger at my dad for dying and making me stand out like a sore thumb, as the expression goes. 

That guilt lasted until I read Dick Cavett’s memoir when I was in my late teens. He lost a parent when he was ten, just like I had. It was his mom. He wrote that he felt guilty because he was angry at her for dying and making him feel embarrassed around other kids. Knowing that someone else felt how I did made the guilt and the embarrassment go away, just like that.

When I was in the 10th grade, my mom was swept off her feet by a man named Nathan who was, shall I say, not honorable. He was handsome and charismatic—and she was very lonely. They got married and life became miserable for me and my older brother, although as a senior in high school, he didn't live at home for long. I have dozens of stories I could tell about Nathan, but I’ll only share two. 

The first is that he made a pass at me. I fended him off thank goodness, but it was traumatic. I told my brother in secret but he went straight to my mom about it. She told me that the reason Nathan had tried to seduce me was that I reminded him of her when she was my age. She actually wanted me to feel sympathy for him.

When the story got out, my mom and Nathan were "driven" out of L.A. by relatives (on both her and my dad's side of the family). The two of them moved to England where they lived for the rest of their lives. He died about 10 years before she did. After his death, my mom and I tried to mend our relationship. She visited me in California every other year or so, partly because I was now married and had a baby. 

It took a long time, but eventually I forgave my mother for how she handled the incident with Nathan. I realized that her taking his side reflected how desperately lonely she was…and how desperately in love with him she was. Forgiving her was something I did for myself. I know, because it felt so good.

A second dishonorable thing that Nathan did was to raid a trust that my dad had set up for me and brother. We were to come into a sizeable amount of money when we turned 25, but the trust had a provision that allowed my mom to get at the assets if she needed them to support her children. Well, she didn’t need money to support us, but Nathan talked her into going to the bank trustee and convincing that person that she did. And so, the money that my father so carefully set aside for me and my brother went to Nathan in large part.

When I went to college, I felt reborn. Not only did I get away from Nathan (they hadn't moved to England yet) but I entered a whole new world of learning and friendships. It was at the University of California—Riverside, that I met Tony, my husband. We were dating each other’s roommates and so found ourselves hanging out a lot together while we waited for our respective dates. That friendship slowly blossomed into love. We became a couple the night of Kennedy’s assassination. At the risk of giving you TMI, our friends had gathered, in shock, at someone’s house. All of us were drinking heavily. I got so drunk that I threw up, not in a bowl, but on Tony. We’ve been inseparable ever since.

We moved to Davis so he could go to graduate school (he has a Ph.d. in Sociology). Four years after giving birth to our son, Jamal, we adopted Mara from Korea. My brother was adopted, so it seemed like the natural thing to do after having had the experience of one pregnancy. Life was good in our family, although we had the typical problems: money was tight, Jamal and Mara didn’t always get along when they hit their teens. Still, those were wonderful years in retrospect. I love my children with all my heart.

After Mara had settled into our family, I went to law school and then joined the faculty at U.C. Davis School of Law. When Jamal and Mara went off to college, I agreed to go into administration and became the law school’s dean of students. I stayed on that job for six years. I like to joke that that’s when my hair turned grey.

When I returned to teaching, I loved being back in the classroom and, based on my evaluations, the students loved having me. My children were in good marriages with spouses whom I loved. In short, I'd never been happier, both personally and professionally. Then Tony and I took that trip to Paris where I got sick…and that brings me to 2001 and the chronic illness that I write about so often.

Thank you so much for reading this brief story of my life.

Some last-minute editing on the bed

The Bumpy Road to Acceptance and the Happiness It Brings

I recently heard the quote “Being an adult is learning to live with disappointment.” I’m not sure I agree with it, but I understand what it means. It means that no matter how amazing our lives are, we aren’t always going to get what we want. And being an adult means we have to learn how to cope with disappointment. 

And yet, I think it’s more helpful to focus acceptance rather than disappointment. I think adulthood is about learning to accept things with grace. Accepting the good things and accepting the bad things. Taking responsibility for the things we need to be responsible for. 

Growing up, I was considered mature at a young age. People always told me I was a little adult or they'd say, “Oh I thought you were so much older.” And that was because I took on a lot of responsibility as a young person and that impressed people. So I grew up thinking I was adult because I could do all these things that were considered “adult.” But the reality was I had no idea what it meant to be an adult. 

Yes, I had no problem taking on responsibility for big projects. I could choreograph an entire musical full of adults. I could tell people what to do and be super organized. But I had very little idea about being responsible for my own life.

Growing up, my parents were great and they were supportive of me in every way. I almost think they were too supportive. I became a grown-up person without ever understanding how to get my laundry done regularly. Or how to clean up after myself in the kitchen. I grew up not realizing that it was an inconvenience to everyone around me if I left my dirty cups all over the house. I was well into my 20's before I didn’t expect my parents to solve problems for me when it wasn’t “convenient” for me to do so. 

My teens and my early twenties are filled with memories of waiting for my life to start. I was in a rush to get out high school and to go to college. I was in a rush to get out of college and get married and get a job. I was in rush to have kids.  

Those years are a blur to me because I kept thinking "This is what I’m doing until my real life begins." I thought I didn’t need to worry about being happy because I assumed I’d be happy when I finally was "grown up." The problem with thinking this way was that, at some point, I realized that life was passing me by and the idea of arriving at the mythical place of “happiness” wasn’t happening.

It wasn’t until my late twenties, after I had a child, that I finally began to understand what it meant to be an adult. I couldn’t not do the laundry just because I didn’t feel like it. I couldn’t stay in bed if I didn’t feel well. Frankly, aside from my mom—who will probably always feel sorry for me—nobody was feeling sorry for me. I was an adult. What felt like overwhelming responsibility and inconvenience to me was simply what millions of other parents had faced all through time: being an adult. 

Even after having a child, I felt as if I still had so much time. I thought there was the possibility of starting an amazing company or becoming famous or doing whatever I wanted at the time. But when I reached my 30's, I started to get an unsettling feeling of dissatisfaction. I realized that most of those dreams were probably no longer a possibility. I began wondering to myself, “If I never do anything more with my life, will I be okay with that?” For several years I was unsure and this led to that underlying feeling of dissatisfaction.

Then I started second-guessing my life. I'd think, “If I'd just done this I'd feel happier” or “If I just do that I’ll feel happier.” But no matter how much I accomplished or tried to become what I thought I wanted to become, the feelings of insecurity and doubt remained. I got a job. I lost the baby weight. I did some professional acting.  I started a dance company. But it was never enough. 

Finally, I realized that nothing I did was going to make me feel better. It clicked inside my brain that to truly feel better I had be able to accept what I am. I had to be able to accept what I am right in this moment. 

To be honest, if I could truly explain how I came to this revelation, I'd probably be a millionaire. The idea that true happiness is to be found by accepting yourself has been around a long time. But no one can tell you exactly how to do it. And it’s not easy. It’s not something you can simply read about and suddenly feel different. Even after I realized that acceptance was the key to my feeling better, it didn’t change everything for me overnight. 

It’s taken years. It’s taken years of wrestling with the concept of acceptance—even challenging the idea—before I finally learned to trust that my life isn’t about what I have done in the past or will do in the future. It’s about right now. That if I can accept where I am right now, then I will be able to accept myself where I am in the next moment. And the next. And the next. 

Even now, there are often times when I'm filled with doubts and fear. When that happens, I can feel myself getting caught in the whirlwind of fighting against what is or find myself wondering “What if?” But the difference is that I'm able to catch myself now. I'm able to slow myself down and remind myself that whatever scenarios I’ve created in my mind don’t matter. All that matters is this moment. All that matters is putting one foot in front of the other; taking one breath after another. 

And while this state of mind doesn’t solve all my problems—I still often struggle—it definitely helps. It helps me accept that the life I am living is the life I am living. I can choose to enjoy it—to really appreciate it—or I can choose to be unhappy. I am choosing to try to be happy. I am choosing to accept what my life is. It doesn’t mean that I'm never disappointed, or that I will stop growing or trying new things and reaching for new stars; but whatever happens...is what happens. And I will choose to try and make the best of it. 

For my mom, becoming chronically ill has truly challenged her ideas about acceptance. Here are her answers to my questions about it.

When you realized that your illness was probably chronic, what was your reaction?

My reaction in the early months and years was denial. Denial, anger, and a lot of self-blame. It was because I thought back then that people didn't get sick and not recover, and the people around me seemed to feel the same way—even if they weren't trying to be judgmental. So I thought, what's wrong with me that I'm not getting better? There was a lot of self-blame which is very common when people first become chronically ill.

My reaction changed when I realized that this illness was just an illness. Even though I was sick, I was still a whole person—just as anyone who is disabled is still a whole person. A person missing a limb is still a whole person. That's when I stopped blaming myself. And when the self-blame went away, so did a lot of the denial and anger. I still get angry every once in a while, but it used to be the way I felt all the time. It was awful. I hid it. I hid it from my kids and my friends. But my husband knew. And I knew.

How long do you think it took before you were able to start to come to terms with acceptance of your illness?

I get asked that question a lot, and it always throws me because it's been 15 1/2 years since I became chronically ill, so it's getting harder and harder to remember. Not harder to remember when I got sick—that's seared into my mind. But it's hard to remember when I started to turn my mind around. 

So, what I do is count backward from when I started writing my first book because that was when the mental healing began. I would say it took about six years to start to accept this illness. I can only hope that my books, my writing, and maybe these interviews help other people not take so long to start moving toward acceptance. Life is too short.

For some people acceptance is the same thing as giving up, or resignation. For you, what is the difference between acceptance and resignation?

Acceptance, as I see it, is acknowledging where you have to start in your life. And for me the main feature of where I have to start is that I'm sick. I'm chronically ill. There's hope in acceptance because you can't take steps to make things better for yourself until you stop and acknowledge how things are for you right now.

So, take a moment to truly acknowledge how you feel and take that as your starting point. For me, that starting point is: "I'm in a body that's sick." Whatever your starting point is, from there, you can open to possibilities of what you might be able to do within the limitations of your illness.

I can't take credit for the expression "start where you are." The Tibetan Buddhist teacher Pema Chodron has a book titled, Start Where You Are, and that title really resonated with me, so I use it to help myself and help others. The emphasis is on start—starting to see possibilities for making changes in your life. Start with an open and mind and an open heart. That's acceptance.

Resignation, on the other hand, is giving up on life. There's tremendous aversion in it and a lot of anger and resentment. It's the attitude of "Life is unfair. I give up. I'll just be miserable from now on." We've all been there. That's resignation. You're treading water when you're feeling that way, and so there's no chance to improve your life.

But there's hope in acceptance.

I went through a resignation phase. But then I realized that, even though I'm limited in what I can do, I'm still alive. You talked about this in your terrific piece above—how you've chosen to be happy. (Sorry for a little detour here, Mara, but I want to comment on one thing in your piece—I don't feel sorry for you. I do worry about you at times though, so that sounds like a more accurate characterization—to me anyway!)

Okay. Back to choosing to be happy. Obviously, no one can be happy all the time but, like you, I've also chosen it as a direction. I choose to find things that are fulfilling to do with my life. I choose to look for joy where I can find it. 

When you're resigned you don't move forward and so you can't even make choices that are likely to make things better for you. That's why resignation is a sad place to be. We've all been there, but hopefully by recognizing the feeling when it arises, we can learn to acknowledge it and move on.

What is your advice for people who are struggling with the idea of acceptance of their current situation?

I have to go to some of the Buddha's teachings here to answer that. Most people have heard of the first noble truth. In it, the Buddha provided a list of the experiences we can all expect in life. And one of the things on that list is illness. There are other things, such as growing old, separation from loved ones, etc. (I'm sure these lessons are included in other religious teachings as well, but I am familiar with Buddhism.)

So I look at the Buddha's list and think, "Wow. Chronic illness is a natural part of the life cycle." That teaching has helped me a lot. It made a huge difference to me to be able to say that this is one of the things on the list that all of us can expect to experience even though it's unpleasant. And so, since illness an inevitable part of human existence, I'd advise people not to fight their current situation. Try to see it as just the way your particular life is unfolding. Illness could happen to anyone. 

It's also helpful to remember that everyone has things about their lives they're not happy with. For those who are healthy, it might be not being able to find love or hating their job. Life offers us many wonderful things but it also has its share of sorrows, and they're on that list from the first noble truth. 

The response to a tough situation should not be resignation because that carries so many negative and painful emotions with it. That said, if it's too hard to move right away from resignation to acceptance, I suggest practicing self-compassion. All that means is recognizing that you're suffering and being nice to yourself about it. So, acknowledge how hard it is to be sick or in pain, and be nice to yourself about it. You can even speak kindly to yourself about how hard it is. In my books, I suggest crafting self-compassion phrases that you can say silently to yourself, almost like a mantra. 

There's no way around it, it's hard to feel sick all the time. Really hard. But it's easier if you can accept it. To do that, take your chronic illness as your starting point and then look around for what might be enjoyable for you. And always, always, be nice to yourself.

You Don't Look Sick

“You don’t look sick.” Four simple words, but perhaps the phrase that over the years of my mom's illness has added the most to her suffering. “You look great, you must be feeling better.” People are just trying to be nice, but those kinds of comments can make her stomach turn even though she smiles in return. It’s that smile that masks the discomfort of her aching body and her rapidly beating heart. It’s that smile that keeps people around her from realizing how bad she’s feeling. 

When people say, “You don’t look sick,” she doesn’t want to be rude so most of the time she does the polite thing and simply replies with “Thank you” rather than trying to correct people's misconception. If it’s a closer friend, she might say, “I feel pretty sick though,” so they know what’s really going on since the truth is that she's very sick. It can use up all her energy to take a short walk or to go out for a rare meal at a restaurant. And when my mom sees herself in the mirror, she sees a sick person. 

Just as this is true for her, those with mental and physical illnesses usually have no outward sign that they’re not doing well, and this makes their struggle even more difficult for friends and family to understand. For most people who have never experienced a long enduring illness, it’s impossible to understand how sick people can feel even though they look completely healthy. And this often causes people who are sick to question themselves, adding even more suffering to their struggle.

Even though I don’t suffer from chronic physical illness, I can understand the frustration my mom has felt. I suffer from depression and anxiety, which are invisible diseases. You can’t see them. There’s no bleeding to indicate that I’m suffering. And because of the stigma attached to mental illness, I’ve become adept at putting forth great effort to hide my struggles. I’m so good at adapting that as recently as a month ago I told someone that I suffered from depression and anxiety and the person literally responded, “No way. No you don’t.” I wasn’t offended, just surprised that people truly can’t see how unhappy I often am just beneath the surface. It's not that I even want to them to be able to see it, it's just that it always surprises me that they can't. It feels to me as if a giant a stamp has marked my forehead with the message that I'm different from everyone else.

As I’ve gotten older, I’ve become more open about my mental battles because most people I talk to admit that they too are struggling with insecurities and unhappiness. And because I’ve been dealing with them for so long, I can often suggest books and authors that I've found helpful over the years. 

I’ve been dealing with how to cope with depression for so long I no longer feel stigmatized by it. It’s simply part of who I am. And the fact that I no longer feel as if I need to hide my depression has been incredibly freeing. As much as I can, I try to be honest with people, because being honest with them means I can be honest with myself. I don’t hit people over the head with the facts of my depression, but if the subject comes up, I don’t shy away from it.

Here’s how my mom responded to my questions on living with an invisible illness:

How does it make you feel when people say “You look great!”

To be honest, it's really frustrating. But I don't tell people that because I know their intentions are good. I've been chronically ill for almost 16 years, and I still dread the "You look great" greeting. And, I still don't have the perfect answer. Sometimes I joke, "Well, I spend so much time resting that I'm not aging." I say it as a joke to break the tension—some people find it funny, some don't. But oddly, it's true that I don't look much older than I did when I first got sick in 2001. 


Why do you think people assume you have to look sick to feel sick?

Well, in my view this culture does a poor job of educating us about the fact that many people have health problems—no matter what their. In the media, all you see is "Buy this, eat that, exercise this way—and you'll  be healthy." So first off, we're "taught" that people aren't supposed to get sick.

Secondly, there's very little discussion about how most people's health problems don't show on the outside—be it their physical or mental health. For example, people can be in terrible pain but they don't let it show. We should always assume that people don't necessarily feel inside the way they look outside. And we should always take people's word for how they feel no matter how they look. We should give them the benefit of the doubt and always believe them.

After I got sick, I realized that I had made the same mistake myself. There was a woman in our IT office at work who told me that she was in pain all the time. I remember thinking, "But she looks fine." So I try to be patient with people who don't understand because I didn't understand myself until it happened to me. But it would be nice if the culture didn't distort the truth so much.

What’s your advice for people feeling sick who don’t know how to respond when people tell them they look great?

Everyone has to find the words they feel most comfortable with, and your response is going to depend a lot on who says it to you. If you're feeling terrible and someone you trust tells you that you look great, consider being open about how you're really feeling. You might even talk a bit about your illness because they may be interested in hearing about what's going on with you. This can lead to you getting some much needed support. But if the "You look great" comment comes from someone who's just an acquaintance or the checker at the market, I've found that the best thing to do is to just say "Thanks" and change the subject.

Another piece of advice I'd give—and this applies to everyone whether chronically ill or not—is to not get down on yourself if you realize afterwards that you didn't give the perfect response. Don't look back and say, "Oh I should have said this" or "I should have said that...yada yada." Everyone looks back after a conversation is over and thinks of what the perfect response would have been. I suggest that as soon as you find yourself thinking about what you should have said, recognize that everyone does this, and then make the effort to let the interaction go.

What’s your advice for people who have friends or family who don’t believe they are sick?

I write a lot in my books and in my articles about how important it is to try and educate family and friends. But the fact is that some of them may not believe you're suffering—neither mentally nor physically. And that goes back to the fact that you look fine on the outside. 

If you have someone in your life who refuses to believe that you have health problems and they're mistreating you because of this, I recommend that you do everything you can to get that person out of your life. Sometimes you can, sometimes you can't. But, for example, if you have a friend who's always giving you a hard time because you can't do this or you can't do that, distance yourself from that person. It's better to have one or two friends who understand you than to have a lot of friends, some of whom don't treat you well. 

If you're not in a position to distance yourself from someone who refuses to believe that you're sick or in pain, I recommend practicing what Buddhists call equanimity. This is a balanced state of mind where we understand that life doesn't always go the way we want it to. Some people come through for us and some don't. 

The more we can make peace with this and accept it, the easier our life will be—and the happier we'll be. From the perspective of equanimity we'd say, "Well they don't believe I'm sick. Some people are going to be like that." Of course, you want to try and educate people but if that doesn't work, you don't want their lack of understanding to affect your peace of mind. 

I get so many emails from people who tell me that people say to them they're too young to be in pain all the time. Sadly, this can make them question the validity of their own condition. It's really important to not allow others who question the state of your health make you question the state of your health. You know how you feel. Be your own unconditional ally. Trust yourself.

How do you think the fact people can’t see your illness has affected how they responded to your condition, particularly early on in the illness? 


First of all, I can't be sure because no one ever said to my face "You're not really sick" or some of the other insensitive things that people have told me have had said to them. I'm fortunate no one has ever said anything mean to me. I have had people say to me "I'm tired all the time too," which simply means they don't get it because I'm not tired, I'm sick.

Early on, my friends and colleagues were confused about why I suddenly couldn't do the things I used to be able to do since I looked okay to them. Even to this day, 16 years later, I assume there are some people I know who probably think my illness is all in my head. Thank goodness my doctor knows it isn't, and my family and friends know it isn't. They see me enough that they can tell I'm truly sick. 

But if I run into people I don't see often, perhaps they think "Why does she say she's sick? She looks fine." It used to really bother me that people might not believe that I'm sick. For example, when I first got my disabled sticker, when I'd exit my car, I'd walk very slowly and actually try to look sick because I was afraid people would think "Why does she have a disabled sticker—she doesn't look sick." 

But I got over that because it was not healthy for me emotionally.

I would say 99 percent of the time, I feel: "This is how I am. It doesn't bother me what you think of me. Take me or leave me." I say 99 percent because every once in a while that old feeling pops up again. Something will happen where I wonder "What if they think I'm not really sick?" But it's very rare that I feel that way, thank goodness. And, as I mention earlier, it can be a self- destructive attitude because it can lead people to question their own judgment about the state of their health. 

So trust your judgment about how you feel, and take care of yourself according to how you feel. If you find yourself thinking, "What if they don't believe I'm sick?" just leave it alone and focus on taking care of yourself. Don't question your judgment. You know how you feel.

Any advice for people who are having trouble with their doctors?

If you have a doctor who doesn't believe that you are suffering the way you know you're suffering my first advice is to find another doctor. Do everything you can to find another doctor. 

If this is not a possibility, do some research on the internet and print out a short article or two to take with you to your next appointment. Some doctors are not open to information from the web, but printing out an article from an association specializing in the illness can show them that your problem is legitimate. Tell them you know they're busy but you hope they'll read it.

Lastly—and this is important—bring someone with you to your appointment if you possibly can. There's something about having a third party in the room that makes doctors take you more seriously. Perhaps because now there's a witness to the interaction. In addition, that person can confirm the symptoms you report and perhaps even speak up for you if you're feeling shy or intimidated. 

It's your right to have someone go along with you. For a long time I didn't realize that my husband could come into the exam room with me. But he can and when he's available, he always comes with me now. It's comforting for me, and I have found that it definitely makes a difference in how some doctors respond to me.

When the Holidays are a Struggle

From Toni:

The media constantly tells us that the holidays are filled with joy and we should be happy, but for many people it’s a difficult time of year. I’m going to write about one challenge: isolation. It’s particularly a struggle for the chronically ill, but applies to anyone who, for whatever reason, feels isolated from others during the holiday season. 

After my piece, you’ll be treated to Mara’s honest and heartfelt sharing about her difficulties during the holidays: overblown expectations and worry. Then she asks me some questions.

I’m isolated due to chronic illness. Even if family or friends come over (this year our friend Richard and our goddaughter Jessica are coming for Christmas dinner), I can’t stay in the front of the house for the entire time they’re visiting. 

I used to cry after retiring to the bedroom and hearing sounds of chatting and laughter coming from the living room (and I admit that once in awhile, I still do). But over the years, I’ve developed some tools to help me cope with my life as it is.

Self-Compassion. Once in my bedroom, I’m alone so there’s only one person who can be nice to me...and that’s me. So I work on treating myself with kindness about my sadness. I pick specific words that express how I feel and I repeat them silently to myself: “It’s so hard to leave the gathering just when the conversation was getting good”; “It hurts to be alone in my bedroom on Christmas.” Sometimes, as I repeat the words I’ve chosen, I stroke one arm with the hand of the other. Stroking my arm or my cheek never fails to ease my emotional pain.

Try to feel happy for others. I also try to cultivate joy for those who are enjoying themselves. I think about the good time they’re having and try to feel happy for them. If I feel envy or resentment instead (usually in the form of “It’s not fair!”), I just keep practicing. I imagine their smiling faces and the sound of their laughter. After a time, I can’t help but feel happy for them, even if I’m still sad. And sometimes, I even start to feel happy myself, as if everyone is having a good time for me. I recently wrote a piece on feeling happy for others; it concerned an incident with Mara’s daughter (and my  granddaughter) Malia. You can read it here.

Tonglen. This is a compassion practice from the Tibetan Buddhist tradition. In the words of Pema Chödrön, tonglen reverses ego’s logic because we’re usually told to breathe in peaceful and healing thoughts and to breathe out our pain and suffering. In tonglen practice, we do the opposite—breathe in the suffering of others and breathe out whatever measure of kindness, serenity, and compassion we have to offer them.

When I breathe in the sadness and pain of all those who are isolated during the holidays and when I breathe out whatever kindness, serenity, and compassion I have to give them, I’m aware that I’m breathing in my own sadness and pain and that when I breathe out kindness, serenity, and compassion for them, I’m also sending those healing emotions to myself. For this reason, I call tonglen a two-for-one compassion practice—we’re not only cultivating kindness, serenity, and compassion for others who are alone, we’re cultivating them for ourselves.

When I practice tonglen, I feel a deep connection to others who also can’t participate fully in the holidays and so, after a while, I no longer feel alone.

***
These are three practices I rely on when I’m feeling sad about being so isolated from others during the holidays. I hope you’ll try each of them and use the ones that resonate most with you.

May your holidays be peaceful and restorative.

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From Mara:

I don’t have much to add to my mom’s very helpful suggestions about isolation, but I do have my own struggles this time of year even though I don’t have a physical illness, I’ve always found the holidays to be super stressful. So stressful, in fact, that I have very few memories of enjoying them. 

I think I created too grand a vision of what I thought the holidays “should” be and was always disappointed when I couldn’t meet my own expectations. When I was younger it was about wanting more than was realistic, and when I got older it was about wanting to provide more than was realistic. 

I simply expect too much—too much of myself and too much of the people around me. And I don’t just mean presents, I mean the whole package. I want every day in December to feel like a Hollywood movie. I want there to be snow (even though I live in Los Angeles where, when you’re in shorts, it’s hard to feel like it’s a winter wonderland). I want to want to make gingerbread houses. I want to want to go to lots of parties and do amazing crafty things like creating homemade advent calendars. 

But I don’t do those things. That’s just not me. And because of this, I feel like I’m not doing the holidays right. I would love to have some snappy fix to suggest to everyone who struggles in this way, but I don’t. 

In addition, Christmastime is full of worry and anxiety for me. I worry if it will feel “good enough” for our daughter. I worry that I won’t be able to be cheery enough. I worry that people won’t like the presents I give them. I worry about money. I worry about time. I worry that I’m not grateful enough for my fortunate circumstances. It’s an endless cycle of beating myself up about things. 

I  realize that I am doing this to myself. No one is demanding anything of me, but it’s still hard for me to take a moment to just enjoy what is. 

This year, however, I am really going to try. I want to be able to enjoy my family and enjoy whatever Christmas Day holds. Because as I sit here, I’m realizing that no matter what happens, the day is going to be how it is. If the day is amazing, then hopefully I can appreciate it. If it’s awful, then we’ll get through it and we’ll wake up the next day and start fresh. My trying to force the holiday to be something it’s not will not create happiness. 

So I am going to challenge myself this year to let go of my worry. I recently read that an effective way to confront worry and anxiety is to talk to them. So when I feel anxious feelings start to build up, well, I am going to tell them to leave me alone this year. I might actually shout it at myself because I really want to stop blocking my own happiness. I’ll keep you posted on how it goes!

And just a short note to my mom: I hope you know that the fact you can’t participate in family things as much as you wish you could has never changed how we feel about you. And even though you aren’t in the room physically, you are always there in spirit. So if you cry, I hope it’s simply tears for yourself and never tears for me. Because there really isn’t anything you could do to make me think you loved me more. Your being sick has never made me feel like you didn’t love me. If anything, the efforts you have made to be a part of our lives in spite of your sickness have reinforced to me how much you love us. 

Okay, sappy part over.

I would love to hear from you guys about any suggestions you have for relaxing and enjoying the holidays. Comment below!
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Interview with Toni about coping with chronic illness during holidays:

Mara: You already briefly covered some suggestions for making the holidays a little easier for people who feel isolated, so I’m going to ask some questions about other topics:

When you feel bad about not being able to participate in family gatherings, do you feel bad because you are missing out? Or are you feeling guilty—as if you are letting down the family?

Toni: Well, I’d have to say both, depending on the situation. I often feel bad when I’m missing out—either because I can’t go to something in the first place or because I have to leave in the middle of a gathering if it’s at my house. 

For example, when all of the family was here this Thanksgiving, it was huge for all of us because the whole family is so rarely together in one place. When I ran out of gas and started feeling really sick, I knew I’d better lie down. I admit there was a little breaking of my heart to have to leave everyone. Gatherings tend to get more loose and juicy and intimate later in the evening because everyone is relaxed. But it’s also when I can’t visit any longer because I feel so awful. So, yes, I feel bad when I have to leave and miss out on the best time of the gathering.

As for whether I feel bad because I’m letting people down—it depends. I didn’t feel like I was letting all of you down at Thanksgiving because you had each other and were having a good time chatting whether I was there or not. 

But if there are only one or two people visiting, then if I have to leave to lie down I do feel like I’m letting them down because I feel like I should be a hostess. For example, Jazmín, a young woman in her early 20’s lived with us for two years when she was in college here. She’s become like family to your dad and me. She came up from the Bay Area to visit us last Saturday, and I was really sick that day. I could only stay out in the living room for two hours—and even that was pushing it. When I felt like I would pass out if I didn’t lie down, I left. She stayed for four more hours—visiting with your dad. I felt bad that I couldn’t be with her more—so yes, I felt as if I’d let her down. She didn’t feel that way, but I felt that way. So to answer your question, it depends on the situation. Does that make sense?

Mara: You’re saying the two emotions—feeling bad because you’re missing out and feeling bad because you think you’re letting people down—are not mutually exclusive feelings?

Toni: Yeah.

Mara: When you think about the holidays before you got sick, do you think you idealized them? For example, as I described above, I find the holidays very stressful. Do you think you are remembering them in a way that they never were simply because you can no longer participate the way you wish you could?

Toni: Yes and no. No, in the sense that, to be honest, the holidays lost their glow for me when I was 10 because my father died two weeks before Christmas. He was the sweetest and gentlest guy. Perhaps I’ve idealized him, but I don’t think so because everyone said that about him. For years after that, Christmas and Hanukkah (we celebrated both) had this empty feeling for me because I loved him so much and he wasn’t there. It’s amazing that so many years later I can still feel sad about it. So to that extent, I never idealized the holidays. 

On the other hand, when I think about Christmas with you and Jamal when you were growing up, I guess I do idealize it to some extent, telling myself, “All our Christmases together were fabulous and now that I’m sick I can’t do them anymore.” But if I’m realistic about it, our holidays were certainly nice but they weren’t always spectacular. What do you think?

Mara: They were nice, I mean they weren’t amazing, but they were nice.

Toni: For one thing, for many years while you and Jamal were growing up, my mother-in law came from San Francisco to have Christmas with us after my father-in-law died. She could be difficult to be with. She loved me, but she could also be blunt and even mean to me. So there were definitely some years that were stressful at Christmas time even though, since becoming sick, I can think back and convince myself that I’m missing out on what was once a perfect time. It’s interesting how we idealize the past like that.

Mara: Has the family done things (consciously or unconsciously) that made you feel worse during the holidays? (This might help other caregivers avoid behavior that they don’t realize is making their chronically ill family member feel bad.)

Toni: When I first got sick and couldn’t travel anymore, I did feel bad that you and your family didn’t come up here for Christmas. I never felt bad about Jamal not coming because he and his wife Bridgett had an established tradition of going to her parents' house in Escondido. But I felt bad that your family didn’t come up. 

But you know, part of my mental healing (which to a large extent came about through my writing—hopefully I’m helping others, but I’m also helping myself) was realizing that you’re an adult with a family of your own. Maybe you want to establish your own holiday traditions in your own home. And you have your own stresses to deal with and may not want to travel at Christmas. So I got over feeling bad and now it’s fine with me for you to celebrate Christmas however you want to.

In general, my relationship with you is that I’m ok with whatever time you want to give me because you have your own life to lead. You’re a grown woman and I shouldn’t be the center of your life. I might like to be, but I shouldn’t be!

The only other thing I can think of that has made me feel bad at times is not having anyone acknowledge that it's hard to be sick and in pain all the time. It's great to hear these five words: “I’m so sorry you’re sick.” Just having someone acknowledge that it’s hard is very comforting. So that would be nice to hear. That said, I’m not asking that of anyone in the family because you’re so good to me otherwise. But it’s something that a friend said to me a few months ago, and I was shocked at how good it made me feel. So that would be nice for people to say that to family members who are chronically ill.

Mara: Do you have any advice for people who are suffering from health problems and are feeling angry about how their family treats them during the holidays? I know we’re lucky to have a mostly understanding family. But for people whose families aren’t as understanding about what they’re going through, do you have suggestions for how to cope with feelings of anger and can you help them communicate to their families how they’re feeling?

Toni: I’ll start with communicating. It’s important to try and help your family understand what’s going on with you. They’re not mind readers. And even if they know what your symptoms are, they still don’t know what it actually feels like to have them—whether they’re physical or mental. So you should try to explain what it’s like. This is so important that in my most recent book, How to Live Well with Chronic Pain and Illness, the very first chapter is about how to teach friends and family what your day-to-day life is like so they'll understand you better. 

That said, so many people have written to me, saying that their family just doesn't understand. They tell me that they’re told things like “If you'd just get up off the couch and started doing things you would be fine.” Or “If you’re that sick, why aren’t you in the hospital?” So some chronically ill people have family members who are just plain insensitive for whatever reason. 

If that’s true for you, it’s natural to be angry about it. When I start to get angry, I rely on what the Buddha said about it: “When you get angry, it comes back at you like fine dust thrown into the wind.” This is certainly true for me. When I get angry at other people, I don’t know what effect it has on them, but I do know that it makes me feel worse and suffer more. This is because anger feels bad emotionally. And emotions are felt in the body, so anger makes you feel worse all over. You can’t always stop anger from arising, but once you’re aware that you’re angry, you can make a conscious decision not to feed it and make it stronger. 

What’s the alternative to anger? It’s accepting that people are the way they are. Whether you’re chronically ill or not, all through life, some people do what you want them to, and some don't. Some people come through for you, and some don’t. It’s important for your own well being not to take other people's behavior personally. Maybe they can’t accept your illness because they’re afraid they’ll get sick or maybe it reminds them of their own mortality. Most of the time, the things we take personally are about the other person, not about us. They’re about their own demons. So the best thing you can do for yourself is to say, “Yes, this person has let me down, but this is the way they are and I’m going to try to accept that.”  

Lastly, two important things. First, don’t let people who question your illness—whether it’s a mental or physical illness— get you to question yourself. If people tell you that you can’t be that sick or that you’re not really depressed, don’t turn their questioning back onto yourself. You know how you feel, so trust your judgment and do what you need to do to take care of yourself.

Second, if someone is treating you badly, do everything you can to stay out of their presence. You’re not going to change them. It’s not good for your health to be exposed to people who are always questioning you or who aren’t nice to you, so do whatever you can to avoid them. If you need to call on a third party to intervene, do so. It’s an act of self-care and self-compassion to stay away from people who aren’t treating you well. 

Malia and Camden (Toni's granddaughters) Christmas 2014

How To Be Sick

Our first official blog post. (It's the second post, but the first topical one.) It made sense for it to be about How to Be Sick, the book that brought my mom's story to the public. To give you a little history about the book, my mother, Toni Bernhard, was always an amazing writer. She has a gift with words that makes you feel like you are living the experiences that she is describing. As a law student and then a legal writing professor she learned impeccable grammar (something I have yet to learn much to her dismay) but there's also a compassionate and loving quality to her writing that makes her stories extremely accessible. Growing up I never doubted that she would eventually write a book. I never imagined it would be a book about being chronically ill.

When my mom first got sick in 2001, it was just 5 months after my daughter was born. The Tonies (my parents are named Toni and Tony which should probably be a whole blog on its own) went off on a trip to Paris and when they came back, mom was sick. They assumed it was a virus and that she would get better. But she didn't. In fact, she got worse.

Months went by and I was distracted by being a new mother and a little out of touch because I don't live near my parents. The knowledge that my mom was still struggling with this mysterious sickness she'd picked up in Paris floated around in the back of my mind, but I just thought she'd get better. I figured they would discover what was wrong, she'd take some medicine, and she'd get better. After about 18 months it became clear that wasn't going to happen.

Becoming sick challenged my mom in every possible way. It still does. It limits almost every aspect of her life. But true to who my mom has always been, she has never stopped looking forward. She has days that are harder than others, but she still challenges herself. She doesn't give up. She learned to love listening to opera. She learned to love watching tennis. She learned to crochet. She learned to embroider. She created a network of friends across the globe through email and Facebook.

And she wrote books.

I'm guessing I wasn't the only person to suggest that she write a book, but I'm going to take credit for it because I very specifically remember telling her she needed to write a book and she needed to try and have it published. I firmly believed that her story about being sick needed to be told. I knew that she could make people feel better by sharing her experiences. Being a person who naturally expresses herself with writing, she admitted to me that she had in fact been keeping notes about how to cope with being sick. Those notes became the basis for How to Be Sick.

Buddhism was a practice my parents developed when I got older. Even though I no longer lived with them, I could see the changes it made in their lives. My mother, always kind and loving, was more peaceful. She became more accepting. She was more skillful at offering insights and suggestions. And while the book isn't really about being a Buddhist, the knowledge that she learned from her many years of practice definitely provides a nice framework for how to handle the obstacles she faces from being sick. 

I believe one of the reasons my parents eventually ended up practicing Buddhism is because of its non-judgmental approach to the world. My parents were hippies. They've always believed in being open to people and experiences. Buddhism allows her to do that while also giving her tools to accept the everyday grievances we all face.

The books have touched many readers over the years. Even before she was an author, my mom was the type of person my friends just liked being around. If you're having a bad day, you want my mom to be around to boost you up. She'll love you up and make you feel better. So the subject of creating a blog has come up before, but was always dismissed as too taxing for my mother to handle. She does write articles for Psychology Today, but the thought of tackling a regular blog felt like too much of a commitment. 

Then we came up with the idea to work on a blog together so that I could handle the bulk of the work and allow her to participate in a way that wouldn't feel too burdensome.

One focus of the blog will be my interviewing her, using questions from readers so that they can hear directly from her. We thought we'd start with an interview about her book: How to Be Sick. Enjoy!

As always, feel free to email us at bloghowtobe@gmail.com with questions you might like to have answered in future blogs!
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Interview with Toni about How to be Sick:


Can you describe some of the symptoms of your illness?

Start with how you feel when you're extremely jet-lagged: sluggish and exhausted. Add to that the feeling that you have the flu without the fever and without many of its acute symptoms such as a sore throat. But you have aches and pains and very little energy. Think of how, when you have the flu, you can’t stray far from the bed and how the smallest tasks and interactions wear you out, and how you sleep 9 hours and still wake up feeling sick. So, combine jet lag and the flu and that’s me. 

So what happens when you get an additional sickness?

I rarely get an acute illness. For that reason the main theory of what's wrong with me is that my immune system is constantly on. It reads me as sick, even though I may not have an active virus. They call it “up-regulated.” As a result, I'm able to fend off most of the acute things that come my way. I’ve been sick for 15 years and rarely have had an acute illness. But when it does happen, I call it “sick upon sick,” and it's awful.

Why did you decide to write a book?

I didn’t set out to write a book…as you mentioned, I’d just been taking notes on what might help me adjust to the shock of my life having been changed so dramatically.  You were, in fact, the first person to suggest I write a book. I'd made some friends on the internet who were also chronically ill—the internet is great for people who are housebound—so I sent the notes to them. They loved them and told me, “This is a book!” So I took their (and your) word for it and started organizing the notes, coming up with chapter titles and the like. And it’s funny because when I was originally just keeping notes, I'd called them “How to Be Sick” so the title of the book came very easily. The titles for next two books were so much harder to come up with.

How did you write it while being sick?

It was hard. And there were days when I would start crying and think to myself "I can’t do this." What I did was to put my laptop on a stool next to my bed and keep a notepad nearby. Then I'd grab one of them and write when I wasn’t feeling too sick. Sometimes just for five minutes if that’s all I could do that day. That’s how I still do my writing today.

One thing that made it possible to write How to Be Sick was that during any given session I only wrote about a subject that I was inspired to write about at that moment. Of course, as I neared the end of the manuscript I had to fill in some of the gaps. For example, there's a chapter in the book on isolation and loneliness, and that was hard for me to write about so I kept putting it off. But as I neared the end of the manuscript, I finally had to force myself to compose it to complete the story. But in general I don't force myself to write in a particular order or on a particular subject.

How long did it take you to write the book?

If I don't count the notes I made and just count from the time I said, "Now I'm going to write the book," I would say about a year. Tony, my husband, thinks it was closer to 18 months. And then of course the publishing process takes another two years or so.

How did you get it published?

That was not easy. I had no connections and no name as an author. But I'd given the manuscript to Sylvia Boorstein who is a Buddhist teacher and a good friend. She loved the manuscript and, as a published author herself, was kind enough send it to three different publishers she was connected to, along with a cover letter. All of them rejected it, saying there wasn't a market for a book on chronic illness.

I thought well, that's that. But I had another friend, Shaila, who'd had a book published by Wisdom. She loved the manuscript and asked if I'd like her to send it to her editor. I said “Sure” not thinking anything would come of it. Soon afterward, her editor (who became my editor for my first two books) called me and said he really liked what he'd read so far and he'd be back in touch in a couple of days—as if I had publishers lined up, vying to publish my book. So I really got lucky because normally preparing a book proposal is a huge amount of work. For example, you have to research all the books in your category and explain how your book is unique. 

How would you describe the book?

It's a practical book. As much as the term is overused, I guess I'd have to say it's a self-help book. It's organized around my understanding of the human condition—its joys and its sorrows. And it contains dozens of practices to help people live a life of purpose and joy no matter what their circumstances. Some of the practices come from Buddhism, but I made up many of them (which is why the subtitle says it’s Buddhist-inspired—Buddhist-inspired usually meaning “I made it up”!).

Do you have to be Buddhist to understand it?

No, and that's been such a surprise and joy for me. I'd say that about 90% of the peole who write to me about how much the book has helped them are NOT Buddhist. People say things to me like “I’m Methodist but your book helped me so much.” I think it works for everyone because it’s not a religious book. In fact, I don’t practice Buddhism as a religion but as a practical path to help me live well. The Buddha was a human being…just like us. He wasn’t a god even though over the centuries some cultures and schools of Buddhism have turned him into one. But he wasn’t. So, to me, Buddhism doesn’t conflict with any religion.

Have you ever practiced what you would consider a religion?

I guess not. My parents were Jewish, but they weren't religious. They were so not religious that we weren’t even members of a temple. There was a short period in high school when I rebelled against not being raised in a religious way. I put aside a specific time each day to read the Old Testament and I went to temple with one of my friends. But that's the only time I recall when I thought of myself as being religious.

Are you surprised by the number of people who aren't chronically ill themselves who relate to the book?

At first, I was completely surprised! I’ve come to realize, though, that many of the struggles faced by people with health problems are the same struggles that others face: money issues, relationship issues, not getting what we want issues!

Is there one particular part of the book that people write to you about the most?

Yes. It's the fact that it never occurred to them until they read How to Be Sick that it's not their fault that they have health problems (mental or physical) and that they deserve self-compassion, not self-blame. Many people tell me that until they read the book, they’d never thought of treating themselves with kindness and compassion. They'd been plagued with feelings of guilt and anger toward themselves, but reading my book allowed them to feel compassion and understanding for themselves for the first time.

That sounds pretty amazing.

I know. It really is amazing. Many people have said that How to Be Sick has become their bible in that they leave a copy by their bed and read it regularly to help them with their struggles.

How does that make you feel?

Really good! Sometimes I think to myself that it almost makes me feel thankful that I got sick, so that I could be of help in this way. Every once in a while I actually do have that feeling—that if I hadn't gotten sick I never would have been able to help the people the way I have. But I have to admit that I would like to wake up tomorrow morning and not be sick. 

We are going to be doing a separate blog about the role of caregivers, but is there anything you would like to say about dad and how this has affected him?

I would say this, and I'm sure he wouldn't agree with me. I think that being mostly housebound for 15 years has been harder on him than on me. Think about all the experiences that couples share. It's not just that I can't go out, but he can no longer go out and have his partner along to experience it with. 

We can't go to family events together, and we can't travel to new places. And it's not just that we can't do the things themselves, but we no longer have them as shared experiences to talk about and to exchange ideas about. We're not creating new memories about the world outside the house. It's changed his life as much as it's changed mine. 

Was one of your motivations in writing the book to get him to understand what you were experiencing?

No, I didn’t think of it that way. He sees the effects of my illness every day. So he knows what I'm going through. I didn’t need to write the book for him to understand. He can see how sick I am. He knows all the nuances.

Do you think though that’s partly because you two have a special relationship and he’s so compassionate and understanding? Maybe other people aren’t as fortunate to have as understanding a spouse or partner.

Yes. Absolutely. I know how truly fortunate I am. I recognize that a lot of people don't have the support from a partner that I have. I've heard from many readers who've been abandoned by spouses. Sometimes their spouses abandoned them with small children. I appreciate how fortunate I am to have a spouse who supports me, and I also appreciate that we don't have to worry about having the money to pay for our home or for my medical bills. So yes, I am extremely lucky and my heart goes out to those who don't have the same support and I do.

If you had to identify one main thing that you hope people take away from reading How to Be Sick, what would it be?

Everybody's life takes unexpected turns and nobody's life turns out exactly as they expected it to or wanted it to. But you can take the life you've been given and, using the practices in the book, learn to be at peace and find joy in your surroundings. Not every day perhaps, but peace and joy enough. That's what I hope people will take away from the book.

For more about How to Be Sick, please visit www.tonibernhard.com.

Toni's books translated into several different languages.