You have just been told that you or a loved one has a major illness, and your world has come to a standstill. Life is not turning out the way you planned, at least not for the immediate future. Although you did not choose to have this happen, you can choose how you cope. Knowledge will help you regain some control, lessen your fear and pain, and help you see the future in a positive light. This article offers you and your loved ones advice for coping with the practical and emotional aspects of illness.
This Life Advice® Program article about Coping with a Major Illness was produced by the MetLife Consumer Education Center.
Now you know. The diagnosis has been confirmed. You're shocked, angry, defeated, or all of the above. Address these emotions, and allow yourself to feel them. They are normal and are part of a process that ultimately leads to acceptance. Experts have divided these feelings into several categories, sometimes referred to as stages.
- Denial. You don't want to believe the diagnosis--and that's only natural. In fact, the initial sense of shock may even cause you to refuse to believe.
- Anger. It's usually not an emotion people feel comfortable with, but anger is a natural and healthy response for anyone who feels helpless and cheated by circumstances beyond his or her control. It's not unusual to take out your anger on friends or family.
- Depression. Whether you express it through tears or silence, this overwhelming sadness comes with the realization that you can't change things. Often the most frequently experienced and difficult stage, you may experience despair, disorientation, insomnia, loss of appetite and a host of other symptoms.
- Acceptance. You come to grips with the diagnosis and begin to move on with your life. You realize that the best way--the only way--to deal effectively with your illness is to learn to address it as yet one more challenge.
People usually go back and forth and are often in more than one stage at a time. You may also experience a wide range of emotions: guilt, fear, sadness. The healing process is different for everyone, and there is no timetable.
Remember, a crisis rarely affects just one member of a family. Rather, it causes a ripple effect that touches everyone. If you are a friend or family member of someone who is ill, you may experience many of the same emotions.
What You Can Do to Cope
Once the shock has worn off, you probably will ask, "Where do I go from here?" You may find some relief in taking charge of as many aspects of your life as possible. Here are some of the ways you can regain control.
Seek information. Many fears arise from a lack of information or misinformation. Now is not the time to imagine a future based on horror stories. Accurate knowledge of your illness will not only ease your fears but will also lay the groundwork for a game plan. You'll know how to approach your condition and plan for your future.
Seek competent medical care. The relationship between you and your doctor is an important part of your future health picture. You should feel confident in your doctor's ability to manage your illness and feel free to ask questions. Before deciding on the doctor who will manage your illness, think about the following factors.
- How experienced is the doctor with your type of illness?
- Will the doctor be offended if you want a second opinion?
- Is the doctor interested in you as a human being, not just as a clinical problem? Can he or she address psychosocial issues as well as physical problems, or refer you to someone who can?
- How well do you communicate with the doctor? Remember, communication is a two-way street. You must make your concerns clear.
- Is the doctor open and friendly?
- Is the doctor board-certified or board-eligible? Board-certified means a doctor has fulfilled training requirements in a specialty area and passed written tests. Board-eligible means a doctor has successfully completed the required training and is eligible to take the exams, but has not done so.
You can learn about a doctor's credentials by checking the American Medical Directory or The American Board of Medical Specialties on the internet.
Paperwork is the bane of everyone's existence, regardless of state of health. But life will be a lot less complicated if you tackle it early. Then once it's out of the way, you can turn your full attention and energies to getting better.
- Your Employee Benefits. If you don't already know all about your benefits, this is the time to learn the details. Find out what your employer's sick leave policy is and how much you will be paid during the time you are allotted. Do you have short-term or long-term disability coverage? How much does it pay and for what length of time? Does your employer pay your medical and life insurance premiums while you are disabled?
- Your Insurance. Here are a few tips about keeping communications running smoothly with your insurance company:
- Keep your health insurance premiums up-to-date. Purchasing new insurance after you have been diagnosed with a major illness is difficult and expensive. It's very important to keep your insurance policy in force by paying premiums on time and in full.
- Keep blank insurance claim forms on hand.
- Make copies of everything you submit for payment.
- Make copies of all communications to insurance companies.
- Keep the Explanation of Benefits (EOB) form together with your copy of the claim form and invoice.
- Review your bills to make sure everything is correct. Submit claims for everything for which you are billed, including medications.
- Review what has been paid by your insurance company.
- If your insurance company denies payment on a claim, do not give up. Find out why it was rejected. If you feel a legitimate claim was refused, ask your doctor's office to help you.
- Your Will. A will is a legal document designating the distribution of your property after your death. Everyone needs a will, whether they have an illness or not. However, addressing the subject may be difficult - especially if you have just been diagnosed with an illness. If you are uncertain whether you or your family can deal with a discussion of your will, ask your doctor or lawyer for advice on how to deal with the matter.
Having a will is especially important if you have young children because it gives you the opportunity to designate a guardian for your children in the event of your death. Without a will, the court will appoint a guardian for your children. A well-written will also help minimize problems for those left to take care of your affairs. A more immediate benefit is that the process of drawing up a will may help you review your financial situation and plan to better manage your money during your illness. If you already have a will, review it to be sure it is up-to-date. Also, be sure your family knows where your will is kept.
- A Living Will. This document is not part of your will. A living will, also known as an advance directive, is a separate document that lets your doctor and family members know what type of care you do or do not want should you become unable to make your own health care decisions. It outlines your wishes about artificial means of life support. A living will is a good way to provide your family with the information they need to make difficult decisions about your care on your behalf. Make sure you discuss the terms of your living will with family members. You must be mentally competent to sign a living will; ask your doctor, your hospital or you local hospice about your state's laws regarding living wills.
- Health Care Power of Attorney. At the same time you draw up a living will, you may also wish to appoint someone to authorize medical or surgical treatment should you be unable to do so. You can include instructions about the type of care you wish to receive. The person who has your health care power of attorney may also have the discretion to cease life-sustaining treatment, per your stipulations. Remember, it is important to have full and frank discussions with the person you appoint to make such decisions.
- Durable Power of Attorney. Consider appointing someone you trust (often a spouse) to take over your legal and financial affairs if you become physically or mentally incapacitated. This will save your loved ones from having to petition the court for power to act on your behalf.
- Life Insurance. If you are terminally ill and find yourself in need of additional money, some insurance companies will pay an accelerated death benefit that provides you with a monthly payment. Basically, you receive your life insurance policy's death benefit early. Call your insurer for more information.
Remember, you are not alone. Every year scores of people in the United States face the challenges of a major illness. And, for almost every major or chronic illness, there is a group or organization that offers assistance on local or national levels. These groups send out educational pamphlets or newsletters, and many sponsor local support groups. Support groups offer many benefits.
- Education about all aspects of your condition.
- Practical advice from people who struggle with the same issues as you.
- A chance to express your feelings without guilt or fear.
- Separate support for friends or family members who may be dealing with different issues.
Find out what groups are available from the social services department of your hospital, your doctor, or the internet.
Heading for the Future
Coping with a major illness--whether yours or a loved one's--is not easy. But despite the serious problems you are facing, learning all you can about the illness, approaching it with a positive attitude and seeking out support can make the future more manageable.
References
A Delicate Balance: Living Successfully with Chronic Illness
by Susan Milstrey Wells
Publisher: HarperCollins Publishers
The Chronic Illness Workbook: Strategies And Solutions for Taking Back Your Life
by Patricia A. Fennell
Publisher: Albany Health Management Publishing
You Don't LOOK Sick!: Living Well With Invisible Chronic Illness
by Joy H. Selak and Steven S. Overman
Publisher: Haworth Press
Consumer Information from the Federal Government
The quarterly Consumer Information Center Catalog lists more than 200 helpful federal publications. For your free copy write Consumer Information Catalog, Pueblo, CO 81009, call 1-888-8-PUEBLO or visit www.pueblo.gsa.gov.
Helpful Links
Share the Care
www.sharethecare.org
This a non-profit dedicated to educating the public, health professionals and clergy about group caregiving as a proven option for meeting the needs of the seriously ill or dying, those in rehabilitiation, the elderly in need of assistance and their caregivers.
American Cancer Society
www.cancer.org
The American Cancer Society has fact sheets, information on research, detection, and treatment, and a state-by-state lists of ACS offices. Plus, there are special sections for breast and prostate cancer.
OncoLife
cancer.med.upenn.edu
This site, from the Abramson Cancer Center of the University of Pennsylvania, is a helpful site for understanding the basics of the various cancers and their treatment.
National Parkinson Foundation
www.parkinson.org
The Foundation educates patients, their caregivers and the general public and strives to improve the quality of life for both patients and their caregivers.
Make-A-Wish Foundation
www.wish.org
The Make-A-Wish Foundation tries to grant wishes to children in the United States with life-threatening medical conditions.
