Helpless Is Not Hopeless

There have been many times in my life when I felt helpless and only a handful when I was hopeless. 

It has taken me most of my life to realize that helpless and hopeless are not the same thing—to realize that the thought that I feel helpless and actually being helpless are very different. For me, feeling helpless simply means I don't know how to help myself in that moment. Hopelessness is when you think you can't be helped, or you think you don't deserve to be helped.

And that is a very scary place to be.

People who have never suffered from depression or never had to struggle through adversity may not understand what I'm talking about. And if that's the case, I'm truly happy for you. Because my greatest wish for everyone is that they can live a life without feeling hopeless.

I'm not going to sit here and pretend that I have all the answers to suddenly make your life a perfect package with a bow on top, because I don't. I regularly find myself feeling helpless, especially when I don't know how to help myself go beyond something that is worrying me. However, I finally came to realize that when things start to get very difficult for me, the feelings of helplessness descend into hopelessness when I started to believe that things will never change—that I'd always feel a certain way or I'd always be in the same situation.

As we've already written about a lot in our blog, change is one of life's constants. If we can count on nothing else, we can count on change. And this realization is one of the things that has helped me stop a downward spiral toward despair when things feel bad. I know now that things will change. It might not always be a big change. But just as in walking, taking one step, even a small one, moves you forward. If you add up all your steps, you will realize you've traveled a far distance.

Lao Tzu said, "The journey of a thousand miles begins with one step." I think about this often as I remind myself that I need to keep myself moving forward, physically and mentally. I remind myself that I can't predict the future, so I don't know what life will be like in a day or a week or a year. 

My dad, a Buddhist teacher, has been working with and counseling prisoners at Folsom Prison. These are men with violent pasts. They're not ever getting out of jail. I asked him, "How do these men not give up? What keeps them living?" He thought about my question for a moment and then replied, "They have lives. They don't have lives that you and I would recognize, but they do live. They have friends. They have a social structure. It's what they live for." Some of the prisoners he works with have learned to meditate. They have learned to find peace and feel joy within themselves. They continue moving forward in the ways they can.

My mother often says, "This is the life we've been given." I've truly taken that one to heart. My life is the life I have. I spent many years being angry that my life wasn't the way I thought it would be, or should be. I felt dissatisfied that I couldn't make my life be a certain way. And every time I found myself consumed by those thoughts, they would lead me to feeling hopeless.

But if I simply acknowledge the life I have and take steps toward living the life I want—then there is hope. And, yes, sometimes feelings of helplessness arise. But that's ok. It's ok to feel helpless. And it's okay to ask for help. And it's ok to allow yourself to be helped. And then, once again, you can start taking those steps forward. If I look back on the path my life has taken, there are so many things I'm grateful for. So many things I cherish that I never could have known were possible. 

Questions for my mom:

Have you ever had a time in your life when you felt hopeless?

I don't think you can get to be my age without feeling hopeless at one time or another. I think it happens to everyone. But it's rare for me these days. I liked what you said about helplessness and hopelessness being different. You also mentioned feelings of not deserving to be helped, and I'm really fortunate in that way because I've never felt that I don't deserve to be helped. I don't get down on myself in that way. But I can feel as if I "can't" be helped and that does lead to feeling hopeless. 

The reason I rarely feel hopeless anymore is that, over the years, I've changed my perspective on life. I don't expect life to be rosy all the time. I don't expect to always like everything that's happening in my personal life or in the world. I know this means that I've lowered my expectations, which some people may think is a negative approach, but, for me, it depends on the context. In the context of trying to diminish being susceptible to feelings of hopelessness, I think it's skillful to lower expectations—to know you're not always going to get what you want.

Do you recall what action you took to help yourself move forward past those negative thoughts?

In addition to that change of perspective, I have a couple of tools for dealing with feelings of hopelessness. One is that I treat hopelessness as an arising and passing mental state or feeling or emotion—whichever word you like. Like you said in your essay, change is universal, so I treat hopelessness as a temporary visitor to the mind. 

One of the ways I do this is to describe it to myself in a way that makes the feeling not a permanent part of who I am. So I may say, "Hopelessness is present today." I know that sounds awkward, but it's very different from saying, "I am a hopeless-filled person." When you dis-identify with the emotion in the way I've described, you lessen its hold of you and that makes it pass away more quickly. When you're able to see it as a temporary mental state, it's easier to wait it out. 

The second thing I do to keep feelings of hopelessness at bay comes from a Zen saying: keep a don't-know mind. Readers of my books will be very familiar with this idea! "Don't-Know Mind" has been tremendously freeing to me, including freeing me from hopelessness. After all, none of us knows what will happen in the future. We don't even know what tomorrow will bring, personally or globally. It could be an unexpected positive change.

So rather than worrying about the future, which can lead to hopelessness, my advice is to acknowledge when you're feeling hopeless, but to also recognize that you don't know how things will play out. Maybe something wonderful will happen! I know it's a cliché, but tomorrow is a new day. We have a friend who fell in love at 71. Neither he nor the woman—who's about the same age— thought there'd be another love for them in their lives. But there it is. You just never know.


But I do want to add something important. If someone who is reading this piece has been feeling hopeless for weeks on end—maybe 2-3 weeks straight—then they need to seek help. Reach out to a friend or get help from a therapist. Feeling hopeless for that long is a sign of clinical depression. A person can be depressed and not feel hopeless, but the two often go hand-in-hand. You should always keep an eye on how long a dark mood sticks around and, if it's a few weeks, then take some steps toward getting help for yourself. 

Do you think people with chronic illness are more likely to struggle with feelings of hopelessness?

I would say that all things being equal, yes. But to me, living with chronic illness in a country like the U.S., in most cases can't be compared to a parent who is living in a dirt-bottomed tent in a refugee camp with her three kids with hardly any food, no sanitation, and no idea how or when she's going to get out of there. Hopelessness in that situation is truly tragic.

Back to your question of whether people who are chronically ill are more likely to feel hopeless. If we are comparing healthy people to chronically ill people with all other factors generally being equal, then, yes, I do think that being chronically ill can lead to feelings of hopelessness. The reason is that people who are chronically ill (which includes chronic pain) feel powerless to do anything to improve their medical situation. 

Of course, there are healthy people who can feel powerless too. Maybe they're in a bad relationship or they're unhappy at work and have no alternatives. That's truly sad. For the most part, though, healthy people can find a way to change their situation because they have some control over it. By contrast, people who are chronically ill can't control what's happening to them physically and/or mentally, and they often feel there are no alternatives for them in life. Feeling that way can give rise to feeling hopeless. I know it happens because chronically ill people write to me about it all the time. 

Whether people are in good health or not, hopelessness is disheartening and it feels terrible. My heart goes out to anyone who's feeling that way right now and I hope our suggestions will help.

"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."

What It's Like to Be a Caregiver and the One Being Cared For

If you struggle with a chronic illness, mental or physical, having people in your life who are close to you can be a blessing and a burden.

Sharing your life with someone, even under the best of circumstances can be hard. Add struggles into the mix—whether they be sickness, or finances, or any of life's other challenges—and relationships can be difficult.

Never has this been more true for me than when I've suffered during extended periods of depression. During these times, dealing with myself seemed almost impossible. Add to that the burden I felt to be a good mother to my daughter and to be any kind of spouse to my husband, and it felt like an insurmountable feat. 

I felt like I was causing them to be unhappy, but there was nothing I could do to fix it. My feelings of guilt made the depression even more oppressive. I am fortunate to have a husband who has always been supportive of me. And even though he never expressed anger towards me, or tried to make me feel bad for the times when I was unable to support him back or even contribute much to the relationship in any way, the feelings of guilt I had were sometimes unbearable.

I’m guessing (although my mom and dad will explore this further in the interview below) that people with physical illnesses or disabilities have similar, if not more extreme, feelings of thinking they're a burden to their loved ones and caregivers.

We wanted to take some time to explore the role of caregivers. So in this blog, as an added bonus, I get to interview my dad who has spent the last 16 years being my mother’s primary source of mental and physical support.

Like me, my mom is extremely lucky to have a spouse who has supported her unconditionally. We know not everyone is as fortunate.

To clear up any potential confusion in the interview, my parents are Toni (that's my mom whom you all know) and Tony (that's my dad). 

Toni about Tony:

Describe how having a chronic illness has changed your marriage.

It's been hard. In some ways, we're closer because of it, but it's been hard anyway. For one thing, we don't go out into the world together and do things. When you don't do things together, not only do you miss the fun of sharing an activity, but you also don't get to share with each other your impressions of the events or of the people you visited with. So, it's harder for us to share our lives because we do so much less together.

In addition, because of that, we've developed, for the first time in our lives—and this is not necessarily a bad thing—different interests because we're not able to do the same things. This means we have to work harder to make sure we don't grow apart. We do that by making an effort to ask each other what we've been up to, by playing some games we like, and watching TV together.  But it's a challenge. I think all partners in this situation have to actively make an effort to keep from growing apart. 

I also think it's important to keep your relationship from being only about the fact that one of you is chronically ill. The fact is, you could spend all day talking about it, but it's a good idea to find things to talk about and to do together that aren't related to being sick.

Has there been any time during your sickness when you wondered if your marriage would survive?

No. And I say that with a lot of gratitude because I know how lucky I am in that regard. It's partly because we had a strong marriage before I got sick, and we'd been together a long time already. But that's us. I hear from people all the time whose spouses or partners have left them.

It's one of the true tragedies of chronic illness—people get abandoned. Especially a parent with children. It happens mostly to women. Their spouses or partners just take off. They don't have the desire or the ability to be a caregiver. Again, this is something I've talked about before—how our culture comes up short in educating people that this may happen. It says in the marriage vows "in sickness and in health," but people don't realize they might actually have to be a long-term caregiver for a spouse who gets ill. 

So, no, I've never wondered if my marriage would survive because I can't imagine a scenario where that would happen. But I am very aware of how fortunate I am, and I count that blessing every day, even if I don't express it to my husband.

Can you give people who are sick any advice on how to cope with feelings of guilt they might have that being sick is a burden to their caregivers?

First of all, I think that feeling is understandable. I've felt guilty at times. I'm doing better now, but I've said to my husband too many times to count, "I've ruined your life," or "I'm so sorry." He always assures me that I haven't ruined his life and that there's no need to apologize, yet I still say these things to him sometimes.

The way I've been mostly able to overcome feelings of guilt is by recognizing this this isn't something I had control over. It's not my fault. People get sick, whether mentally or physically. It's one of the risks of being alive, so feeling guilty about the burden that it might impose on your caregiver serves no useful purpose. 

Actually, in my view, guilt never serves a useful purpose. The reason I say that is that it handcuffs us mentally and that keeps us from problem-solving and moving in a positive direction in our lives. What I mean is that it keeps us from thinking about how we might make things better for ourselves and our caregivers. I know it may be easier said than done, but I suggest that instead of spending your time feeling guilty about being a burden to your caregiver—do something nice for him or her. Think of some little thing you can do to show your appreciation, because guilt doesn't solve anything. And there's no reason for it because this stuff happens in live. It's nobody's fault.

So you instead of feeling guilty about being a burden to your caregiver, you would say it would be more helpful to focus on being grateful for them?

Yes. Think of the ways you're grateful for your caregiver and do something to show him or her that you feel that way. It may only be saying "thank you" or giving a hug. For example, on a day when I'm feeling good enough, I go in the kitchen and do the dishes. My husband does the cooking and the dishes every single day. So rather than feeling guilty that he does this, I try to pitch in when I'm able. It's a small way of thanking him for all that he does for me.

Do you have any advice for people who are chronically ill who have trouble communicating their feelings to their caregivers?

This is something I cover a lot in my books, and I offer several ideas for what to do when you're having trouble communicating. One suggestion is to have a third party present. That person can give you support and might help you express yourself in ways you're not able to.

Here's another suggestion that has helped people a lot. If you're having trouble communicating your feelings to your caregiver—write him or her a letter. I thought of this idea because, many years ago, I had friends who were in couples therapy. They were unable to speak to each other without one or both of them shutting down, so communication was impossible. Their therapist suggested that they write letters to each other. The wife told me that it led to a breakthrough because each of them was finally able to understand how the other one felt.

I know it can work in a caregiver situation because I mentioned this idea of writing a letter in an article that was published online, and I got an email from a reader who said, "This is how I got my mother to understand my chronic illness." Instead of taking care of her daughter, her mother was basically harassing her. The mother was constantly telling her to get up and go out—that kind of thing. So the daughter wrote her mother a letter in which she described what her day-to-day life was like and how hard it was to feel sick all the time. She said it completely turned their relationship around—her mother became her greatest support. 

So it's an interesting idea. I actually wrote a letter myself early on in my illness. The text of it is in my first book, How To Be Sick. I sent it to some of my friends, explaining why I'd suddenly become so undependable—having to cancel visits at the last minute, etc. I'm not sure what effect it had, but I do know that I felt better having written it. Actually, I now remember that two of them said something like: "This was really helpful. I didn't realize what was going on with you." So the idea of a letter—or an email—goes beyond just caregivers as a way to communicate what you're going through.

One more thing on this subject, In my most recent book, I wrote about something called "active listening." It's another way of facilitating communication. The key is to use the word "I" more than the word "you." This is effective, first, because the word "you" can be taken as a criticism and second, because the word "I" simply expresses how you feel and no one can deny how you feel. This is called "sending I messages instead of you messages." So always check your speech and check your writing and try to express things from your point of view. No one likes to be attacked, even gently, so this is a non-confrontational way for you to express how you feel.

[Note from Mara: My mom's latest book, How to Live Well with Chronic Pain and Illness has two chapters devoted to helping caregivers.]

We were fortunate that my dad, Tony, was willing to contribute some thoughts this week about being a caregiver and how my mom's illness has affected him.

Tony about Toni:

As a caregiver, what are the biggest challenges you've faced?

The appearance of chronic illness in life may not be a welcome change, but we didn't have much to do with our appearance in life in the first place, so the biggest challenge is learning how to deal with what we didn't plan for and don't want, without making things worse for everyone involved. You can't expect to make things better if you can't keep from making them worse in the first place, so acting out of disappointment, frustration, or anger doesn't improve anyone's life. The biggest challenge is overcoming our wish to hold onto the way we'd rather things be.

Do you ever feel angry at Toni for being sick? Do you ever feel frustrated about it? And if you feel either one of those, how do you work through those feelings?


I don't feel angry about it, but I do feel sad. I can see how hard it is for her to be unable to do things even as simple as going out to dinner or joining others in socializing in the house. It's pretty unrealistic for me to be angry because she can't regain her health—she certainly would if she could. Perhaps realizing that life comes with a raft of stuff you don't want no matter who you are is working through it? 

If you met someone who just discovered they were going to be the primary caregiver for someone with a chronic illness, what are a couple of pieces of advice you'd give them to ease their transition into the caregiver role?

Any specific advice I might offer would depend so much on the particular disability. A caregiver who needs to deal with someone losing mental capability as with Alzheimer's is very different from having to deal with the problems associated with a condition like Toni's where she is still fully present mentally but pretty much stuck in the house feeling lousy. 

Overall, I'd remind someone just beginning life with chronic illness—either as patient or caregiver—that life doesn't unfold according to any model we have of how it should be, and that expecting (much less requiring) things to be a particular way is only setting ourselves up for the added frustration and anger that come from not getting what we want. If we don't roll with the punches life throws at us, they'll knock us right down and leave us there. So I guess my advice would be to do the best you can and learn along the way.

Toni and her husband (and caregiver) Tony on their wedding day.

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

Introductions

Hey everyone, it's Mara. Welcome to the HOW TO BE blog.

For our first post I thought I would just do a brief introduction about me and my mom. Many visitors will be familiar with my mom, Toni Bernhard, author of How to Be Sick, How to Wake Up and How to Live Well. For those of you who don't know her, she was the Dean of Students at the UC Davis Law School, a mom and grandmother when she was suddenly struck with an illness on a trip to Paris 15 years ago. She has never recovered. Years of doctors visits and research have gone by and she has never gotten a definitive diagnosis or "cure." She wrote about her experiences coping with chronic illness in her first book, How to Be Sick, detailing her struggle with sickness, being forced to retire from work decades earlier than she would have otherwise, and the hardship of missing out on most social aspects of family and friendship. She's very excited that her publisher has asked her to do an expanded second edition of How to Be Sick. It will be published in Fall of 2018 and she's really enjoying updating it.

Her years of Buddhist study and her kindness and compassion give her a unique perspective on life. She is truly one of those people who make you feel better to be around. If you are interested in reading one of her books, you can visit her webpage www.tonibernhard.com.

About me—my name is Mara. I live in Southern California with my husband and my teenage daughter. I was adopted by Toni and Tony from Seoul, Korea in 1977. (They were awesome parents in case you were wondering.) And although I don't suffer from chronic illness in the same way my mother does, I have spent years researching and reading books about how to deal with life. Life has always felt a little bit mysterious, often complicated and—well, for me, difficult. I have always felt as if I wanted to be happier, I wanted to be more successful, I wanted to be popular, I wanted to be left alone, I wanted to be less tired, I wanted to be less bored, I wanted to be less busy...I just always wanted to be something other than I was. Starting in high school I began suffering from severe depression and as an adult I suffer from depression and severe anxiety. So my search for relief from my various struggles is never-ending.

Now that I'm older, I'm coming to grips with the reality that there are no magic answers, that there is no easy fix. And that even if you don't have obvious hardship, you can still struggle. And that struggle is still valid even if nobody else understands it. And there have been times when I really struggled with the thought that I wasn't sure I could make things better for myself. But when truly faced with the stark choice of survive or don't survive, I chose survive. And once I chose to survive I had to decide if I wanted to survive in misery or try and find another way. I am choosing to find another way. 

I'm inviting you to come with me on my journey because I don't have answers. There's no ending to my story yet. so hopefully you can help me and I can help you too. Fortunately one of my coping mechanisms has been to turn toward humor and sarcasm, so the journey will at least be funny.

Facts about Toni: Breast cancer survivor, Sociology major, law professor, married for a long time, obsessed with her dog Scout, artist, has literally crocheted me about 100 scarves, has a left-handed son.

Facts about Mara: Cut my own bangs every week, Political Science major, dance teacher, married for fewer years than Toni but still for a long time, have two cats and a dog but would also like a pig and a goat, own at least 100 scarves, have a left-handed daughter.

So one of the things we want to do with the blog is give visitors a chance to ask Toni (or Mara) questions. The questions can be about chronic illness or not, about her books or not—anything! Please email us at bloghowtobe@gmail.com or comment on our posts. Let us know what's on your mind!

1996 at Mara's Wedding