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.

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.