Chapter 2

The Keys to Success

I believe it is the quality of life, not the quantity, that is the most important.… There is no right way or wrong way to deal with a condition. The difference is between dying of a condition, and living with it.… I’ve used each stage as a challenge to grow.

—Anthony T.

 

Self-pity never accomplished anything constructive. Self-determination is the key that opens the right doors.

—Kathy S.

 

This chapter focuses on expecting the best.

Section 1. Keeping Positive

More and more studies confirm the importance of the mind/body connection to your health and your immune system. The concept of “living with” something, instead of “dying of” it, leads to a happier life that in turn tends to be healthier and longer.

Negative emotions such as depression keep you from taking care of yourself, your health, and your financial needs. It is understandable that you will have your ups and downs, but keep in mind that the glass is always half-empty and half-full. You have the power to choose how to perceive it.

George Solomon, M.D., a leader in the field of psycho-neuro-immunology (the scientific term for the mind/body connection), advises that it is never too late to change your attitude. As Andrea B. put it, “We can’t change the facts. But we can change the way we relate to them.” A positive attitude makes each day more enjoyable—and there’s no downside.

Don’t be afraid of call on friends, family, members of support groups, and even professionals, if necessary, to help keep you positive. They are likely to be more than willing. There are also innumerable books that your physician, GuardianOrg, support group, mental health professional, or spiritual adviser can recommend. A book that was particularly influential in my thinking is Love, Medicine, and Miracles by Bernie Siegel, M.D.

Section 2. It’s Your Health and Your Life

As you read through the text and apply the information gathered here, remember that

• we are talking about your financial and emotional health.

• you have more at stake than anyone else. Consequently, you have to be the decision maker.

• there is no right way or wrong way. After you have the facts, trust your intuition as you make your own decision.

Section 3. The Team Approach

Whether you like it or not, you cannot go it alone. You will need to at least consult your current medical specialist. The odds are that at some time you will even require several physicians in different specialties.

I encourage you to consider all the assistance that is available. Think about which advisers you may need, and put together a team that fits your needs and finances. You are the captain. No matter how educated or high-powered any particular member may be, they are your advisers, not the decision makers. Encourage them to speak with each other and to act as a real team to advise you on how to achieve your goals, including the best financial, physical, and emotional health possible.

Empowerment may be a new role for you, and it may even provoke anxiety—but it is critical to your well-being.

Section 4. Now Is “When”

This is the time to consider those things you’ve always wanted to do “when”—when you have enough money; when you retire; when you get to that certain place in life. You will soon have a fix on what you can afford and what you can expect financially. Within that structure, balance your responsibilities to your loved ones and decide how you want to live your life.

Kathleen R. used her diagnosis as a spur to stop working in publishing and finally start the bookstore she’d always wanted to run in the town where she lives.

Michael M. sold one of his life insurance policies to finance a trip around the world he’d always wanted to take.

A client, Herb S., and his wife thought their differences had become irreconcilable and were discussing divorce after twenty-seven years when he was diagnosed with lung cancer. His illness reminded them of what they loved about each other. Their differences faded into the livable background.

Section 5. Coping

From coping with a diagnosis to handling treatment, to dealing with long-term emotional and financial concerns, people dealing with a life-challenging condition often face stressful situations. Some of the most common stressors are changes in self-image, practical problems such as medical bills and job issues, relationships with family, friends, and coworkers, uncertainty about the future, fears about the return of a condition, and death.

The following tips come from the National Cancer Institute, based on the experiences of survivors in the American Cancer Society’s I Can Cope program. They apply to all life-challenging conditions.

• Be kind to yourself. Instead of telling yourself you can’t do something you should do, focus on what you can do and what you want to do. Instead of telling yourself you look awful, think of ways to make the most of your best features.

• Don’t be afraid to say no. Polite but firm refusals help you stay in control of your life.

• Talk about your concerns with others or with a support group. It’s the best way to release them.

• Learn to pace yourself. Stop before you get tired.

• Give in sometimes. Not every argument is worth winning.

• Take time for activities you enjoy, whether it’s a hobby, a club, or a special project.

• Take one thing at a time. If you’re feeling overwhelmed, divide your list into manageable parts.

• Set priorities. Don’t try to be Superman or Superwoman. (Ask for help when you need it.)

• Solve problems like an expert. First, identify the problem and write it down, so it’s clear in your mind. Second, list your options, including the pros and cons of each. Third, choose a plan. Fourth, list the steps necessary to accomplish it. Then give yourself a deadline and act. Sometimes just having a plan can reduce the stress of the problem.

• Get enough sleep.

• Focus on the positive. If you have a setback, think about all of the good things you’ve done.

• Eat properly.

• Get enough exercise, if you are able. It’s a great way to get rid of tension and aggression in a positive way. (Even if you are bedridden, you can do isometric exercises by tightening and releasing the muscle groups you can move.)

• Help others. Reaching out to someone else can reduce the stress caused by brooding.

• Laugh at least once a day.

Section 6. Options for Getting Emotional Support

There are many options for obtaining emotional support.

Call a telephone hot line in your community for your particular condition. Your GuardianOrg may have a hot line or can steer you in the right direction. Or look in the yellow pages under “social service organizations.” Ask the hot line to match you with someone with a history similar to yours. He or she can give you practical advice and emotional support over the telephone. Family members can also be linked to “veteran” family members who’ve coped with similar issues.

Talk to your friends and family. Help them understand how they can help you. Talk about your needs for support. Don’t let the conversation always center on your condition.

Join a support group. Emotional support is one among many reasons to join such a group (see chapter 35).

Get counseling and practical help. A social worker who specializes in working with people with your condition may be able to help. You can find social work services through your GuardianOrg or your local hospital. If your needs are beyond the abilities of a social worker, consult a nurse therapist, psychologist, or psychiatrist. Talk about how to handle your fears and concerns and ask questions. Talk with your spiritual adviser.

If your spouse or family needs assistance in sorting out issues your condition has raised, consult a licensed family therapist, psychologist, or psychiatrist.

Support yourself. Draw on your own strength. Read about how others cope. Ask at your local bookstore for accounts by other survivors. Be your own advocate. Ask for what you need from your doctor, hospital, family, friends, and coworkers. Stand up for your rights with health insurers, health maintenance organizations, and employers.

Section 7. Worrying

World-class worrying can accompany a diagnosis of a serious condition. Worrying about the worst possible outcome of a test or what will happen tomorrow is common—but useless.

Susan R. was concerned about the results of a CAT scan and feared that she might need another round of chemotherapy. A meditation teacher suggested that she play out the outcome of whatever she was afraid of and figure out how she would handle it. He suggested that she could then put the fear away. Once Susan realized that she could handle what she feared and knew what she would do, she could let the worry go.

Instead of worrying, “be prepared.” It’s more productive and ultimately more rewarding.

Section 8. No Shame, No Blame

Working with money often brings a lot of emotional issues to the surface. This is normal. Jessie V. still gets depressed when she thinks of the bad investment she made in her friend’s “can’t lose” business idea. Don’t get mired in “If only I had…” or “If only I hadn’t…” The objective is to move forward and do your best. Doing your best is all that is asked of you. Shame and blame will only interfere with your ability to achieve financial and emotional well-being.

Section 9. Relaxation

Relaxation has been found to slow the heart rate, soothe the digestive system, ease muscle tension, diminish anxiety, and reduce pain. There are many relaxation techniques from which to choose: from engaging in pleasurable activities to meditation and other Eastern practices. The list is too long to include here, but it is crucial to recognize the importance of relaxation. If you’re tense, seek out the method that seems right for you to help you relax. Your physician may have suggestions, or your friends and certainly members of your support group or GuardianOrg.

Section 10. Volunteer

Many people have found hope and healing through helping others. Helping others can also make you feel stronger and more in control. Studies show that volunteering helps promote health and longevity. How and what kind of time and energy to volunteer is a purely personal choice.

Think about helping other people with your condition who may not be as healthy as you are. You may want to offer your services to a telephone hot line, support group, or a special patient-to-patient program. Your social worker or local GuardianOrg may be able to put you in touch with survivors who could use your help.

If you volunteer for a GuardianOrg associated with your condition, you will also have support, a place where you can speak freely, and an important source of information.

Tip. If you volunteer for your GuardianOrg, particularly if you are in a position of authority such as on the board of directors, be sure the organization has liability insurance that covers you. If there is no coverage, check with your insurance broker to determine your risks and coverage.

While all the private insurance coverages and governmental programs I have seen permit volunteer activities (including working at an organization without pay), check your own policy and/or government program “just in case.” While Rob W. was on disability, he ended up with volunteer speaking engagements all over the country plus hours and hours each day of giving people advice on the telephone. He worked as many hours and with as rigorous a schedule as when he worked for pay. Still, he was considered legally disabled.

Section 11. Charity

Why give. Aside from the moral benefit associated with giving to others, giving to charity can be directly beneficial to you. Your GuardianOrg can be critical not only to your physical well-being, but also to your emotional and financial well-being. In this imperfect world, just as a squeaky wheel gets more attention from a physician, a donor tends to receive more consideration from a charity or hospital. When Marni was admitted to Mt. Sinai Hospital, her insurance coverage was for a semiprivate room, but the hospital moved her to the executive suite, which happened to be vacant at the time. Marni had been an active volunteer on the development committee for two years before her hospitalization.

Look before you leap. Make sure you know the exact charity to which you want to donate: many sound alike. Request written information on the group’s finances. The less they spend on administrative overhead and fund-raising, the more they have to put toward worthwhile programs. The better charities spend an average of only 23 percent of their budget on overhead and fund-raising. If the charity only passes money through to other charities, overhead should be much less.

Tax exempt. Make sure the group is tax-exempt as a charity or contributions may not be tax-deductible. There may even be something fishy about the organization. You can confirm an organization’s status by asking for a copy of its IRS tax-status-determination letter or by contacting your state charity registration office or the IRS.

Tip. One way to give gifts to your friends, and still benefit a charity, is to give gifts of items sold by a charity or for which a charity receives part of the proceeds. Some charities have their own catalog. There are also catalogs that include items benefiting a range of charities concerned with a given condition. (See the resources section under “Gifts.”)

Stretching your dollars. A gift to an organization that does effective advocacy work to increase government spending for research and/or services can mean many times that amount in research and/or services about your condition. Also, many employers have matching-grant programs that double the amount of your contributions.

Section 12. Whom and When to Inform

Keeping secrets of any kind can be stressful and exhausting. Nevertheless, depending on your condition or the other people involved, there may be overriding reasons not to inform coworkers or superiors about your condition. There may be certain friends and even family members who don’t “need to know” right now. If you decide to tell, who, when, and how should be carefully thought through. The following discussion provides issues to consider in both the work and personal setting.

General considerations.

• There is nothing about any health condition to keep secret or be ashamed about.

• Since it is difficult to remember whom we tell what, and even more difficult to guess who may have told whom, it is better to tell everyone you care about and who cares about you—unless there are overriding reasons not to inform them.

When to inform others. For all settings, here are some general guidelines:

• Educate yourself about your condition before any discussion, so you can answer questions and anticipate others’ reactions.

• Timing is everything. Don’t even try to inform other people when you are in the midst of a trauma that requires all your emotional and/or physical strength. Traumatic occasions include the time immediately after diagnosis or a dramatic change in condition. In fact, those are not good times to make any major decisions.

• Consider the risks and benefits of informing others.

• Ask yourself whether the person under consideration really needs to know.

• In a personal situation, and even in some work situations, consider whether this is a good time in the other person’s life to hear this information.

Why tell. Carefully consider why you want to tell someone and whose interests are best served by telling. Ask yourself:

• What will be gained if they react positively, and what will be lost if they react negatively?

• Has the person already figured out your condition, but is waiting for you to tell?

• Will they learn about it from someone else, possibly with the wrong facts?

Tip. You will never know how people will react. Keep in mind when you tell, “No shame. No blame.”

How to tell others. Once you’ve decided to tell someone else, how you do it can be important. Think about it carefully before proceeding. Your way of relating to people and your history with each person are important factors to consider. Are you more comfortable

• talking in person where nonverbal communication can be important and the two of you can take whatever time is necessary?

• on the telephone, which is more impersonal but an easier way for some people to share personal feelings?

• writing a letter where the recipient has time to digest the news alone?

• having someone else tell them so you don’t have to deal with the possibly negative reaction, or even the possible level of sympathy?

• talking to the person in a public place, or in front of a third person, so as to possibly temper their reaction?

What to disclose to others. You also have to decide how much you want to disclose to people.

• Before you begin a conversation, decide how much you want to disclose, yet be ready to be flexible depending on the conversation.

• Prepare your answers, particularly to questions you may think of as sensitive.

• If you are uncomfortable with a question, communicate that and feel free not to answer it.

Whom to Inform

Family and friends. For each individual, weigh the cost in stress to you of not telling against the possible emotional and even financial support you may gain or lose by telling that person about your condition. Sally Fisher, author of Life Mastery, suggests telling now the people you think of as your friends. It will avoid the unnecessary pain that comes with finding out when you’re not well that some “friends” are only fair-weather friends.

If you don’t want the news to spread, think about whether the person you are considering telling can be trusted not to tell anyone else.

Consider telling people in clusters. When one person knows, the rest of a group probably knows.

It may be worthwhile to know how to access a support system for the person you are telling. Most GuardianOrgs have hot lines to answer questions and support groups for family members. Your spiritual adviser may also be a good source of information and emotional support.

If you are a parent. Consider how telling other parents or a school might affect your child. Planning for the custody or guardianship needs of your child (see chapter 32) might also influence whom you tell and when. See the next section concerning communicating with your child.

Neighbors. Be careful whom you tell in your neighborhood. There is no right and wrong, but you probably already know what particular neighbors think about particular health conditions. Keep in mind that telling neighbors may impact on your children.

Tip. Some conditions, such as HIV disease, currently come with a lot of baggage. If this applies to you, perhaps there are some people you should never tell.

Be especially careful about telling people at work. It’s up to you whether or not to disclose your diagnosis to your coworkers and your employer. Read chapter 6 for a discussion of this issue.

Your professionals. Under the Americans with Disabilities Act, the professionals who take care of you cannot discriminate against you based on your health condition.

Caretakers may need to be informed in order to better address your needs and/or to take necessary precautions against contagion. If there is any possibility of spreading an infection, you owe it to the persons who work for you to inform them. If they do become infected, you have less chance of financial liability if you’ve disclosed your status.

Be aware that all professionals with whom you discuss your condition should keep it confidential. There may even be state laws protecting your medical information against disclosure by any of your team members. Note: Confidential is not the same as privileged. All your discussions with your doctor, lawyer, and clergyperson are privileged in addition to being confidential. When information is privileged, the professional with the information cannot be required to disclose it, even in a court of law. Discussions with your accountant and financial planner are confidential, not privileged.

Sex partners. Telling a person with whom you are about to have sex can be embarrassing. If your condition is not contagious, the choice is yours alone. However, if your condition could be contagious, you are setting yourself up for a liability problem, in addition to a possible criminal act, by not informing the person. Consider the psychological and physical risks to you and your partner. If you have a contagious disease, and if you choose not to notify past sex partners about your condition, there are departments within your state department of health that will notify them for you. If you wish, these departments can usually be approached anonymously.

Section 13. Children

When a condition strikes a family, it is likely that children of all ages will sense a change no matter how you try to hide it. Trying to protect them will only allow them to imagine that things are even worse than the real situation, and to possibly blame themselves. It will also prevent you from helping them to understand and eventually accept what is happening.

It is important not only to communicate with your children, but to listen to them to make sure they understand what is happening.

Talk with the child in a language and in a manner that the child can understand, taking into account the child’s age and individual characteristics. Consider using drawings or dolls to clarify what you’re communicating. If there is an ongoing treatment, make sure the child understands the nature of the treatment and what it is hoped will be accomplished. Ask a child to explain back to you what you said so you can be sure he or she understands.

Before you tell a child

• prepare yourself for the child’s reaction with a bit of self-exploration. How have personal separations and losses affected your thinking and behavior? Did you have a distinctive pattern such as disbelief, protest, disorientation, withdrawal, sadness, acceptance, or reattachment to remaining persons? Knowing how you reacted can help you anticipate possible reactions from your child and also give you the patience and understanding to deal with the child’s reaction.

• anticipate that each child will react according to her own personality.

• keep in mind that a young child’s capacity to understand far exceeds her capacity to verbalize.

• be truthful.

• choose your words with care. Consider practicing what you want to tell your child.

If you need assistance telling your children, consult the appropriate members of your team or How to Help Children Through a Parent’s Serious Illness (see the resources section).

Be sure the children understand

• that they had nothing to do with the cause of the condition.

• that they are still loved and will be cared for.

• that despite possible shifts in attention, the children’s needs will still be addressed.

• if the condition is contagious, there is no risk to them.

• the reality of the situation, in terms they can understand.

Tip. Look for ways to involve your children in taking care of your condition, such as asking them to run errands for you.

Adult children. Informing older children about your condition may bring up issues of role reversal as well as mortality. It may also bring up unresolved issues that suddenly take on more urgency.

Section 14. Privacy

In our modern world, it is unlikely that your health condition will be totally confidential. If privacy is a concern to you, you should be aware of the potential sources of a breach in confidentiality.

Potential privacy problems may arise when people unwittingly put information about their medical profiles into the public domain. Purchasing medical supplies with a credit card, using a toll-free number to learn about new drug treatments, and even going on the Internet to get information about illnesses and therapies can result in having your name put on a variety of lists for product pitches.

Sometimes there are data leaks to employers or even the general public about personal medical information. While balancing patients’ right to access with adequate privacy is becoming a hot topic, to date no federal law offers universal protection of the privacy of medical records. State laws vary.

As discussed in more detail in chapter 3, when you apply for life, health, or disability insurance, your health information may be shared with other companies by the Medical Information Bureau.

There are some basic consumer tactics that you can take to limit circulation of your personal information. The first is to be skeptical about signing whatever your health-care provider puts under your nose. Negotiate to disclose only what is absolutely necessary for the specific purpose. When you sign an insurance form, try to narrow its scope if possible, rather than endorse wholesale transfer to the carrier of your entire chart. Cross out permission to give the information to any person, group, or agency that does not have a need to know. Some insurance companies may reject release forms that have been rewritten. Make the changes you desire, and discuss it with them later.