Keys to Success for Living With a Serious Illness

The following article is an excerpt from David Landay's Be Prepared: The Complete Financial, Legal, and Practical Guide for Living With a Life-Challenging Condition (St. Martin's Press). In this selection, the author, who serves as a member of the Board of Directors of the National Association of People with AIDS, discusses some of the keys to success in coping with a serious illness.

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 to call on friends, family, members of support groups, 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 (guardian organization, any organization that serves, advocates for and/or does research on specific conditions), 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 Bernard Siegal, M.D.

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.

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.

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, Jon N., and his wife thought their differences had become irreconcilable and were discussing divorce after 27 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.

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 muscled groups you can move.)

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

• Laugh at least once a day.

Options for getting emotional support

There are many options for obtaining emotional support.

• Call a telephone hotline 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 hotline 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.

• 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.

This article has been reprinted at The Body with the permission of AIDS Project Los Angeles (APLA).