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After a Scary Diagnosis

Many people who’ve been diagnosed with a life-threatening illness describe it as a loss of what life was supposed to be like—the life they had planned on living. It may also mean the loss of your favorite foods and activities, of your independence, and of power and order. It’s the terror in knowing, and in not knowing, and it’s the loneliness of living outside the bustle of everyone else’s life.

Some life-threatening illnesses come seemingly out of nowhere, and others arrive after months of medical testing. Either way, the news comes as a blow, and it’s hard knowing where to turn. “I have felt like a healthy person who has been accidentally drop-kicked into a foreign country, “ writes Jesse Gruman, Ph.D. in her book Aftershock: What to Do When the Doctor Gives You or Someone You Love a Devastating Diagnosis. “I don’t know the language, the culture is unfamiliar, I have no idea what is expected of me, I have no map, and I desperately want to find my way home.”

But the way to good health seems as distant as Oz when you’re feeling frantic. That’s why, if there’s time, you need to give yourself at least a day or two to digest the news you’ve just received. Set up any medical tests and appointments, and then take a couple of days off from everything else. During this time, only do what makes you most comfortable.

How to take control

Once you’ve given yourself a chance to process the news of your diagnosis, it’s important to take the steps necessary for the best possible outcome:

  • Be yourself.

    After the diagnosis, it may feel like the disease defines you. You may start to describe yourself by saying, “I have [disease].” But you are also a spouse, brother, sister, friend, teacher, attorney, bus driver, or artist.

  • Stay hopeful.

    Having a positive perspective helps. People with a life-threatening illness tend to feel better—physically and emotionally—when they feel able to manage their disease. Knowledge and optimism help people to feel empowered.

  • Establish your inner circle.

    Decide with whom you’ll share your medical information. Some people want to be surrounded by family members and friends. Others prefer a quieter environment. Consider what’s best for you and let your loved ones know.

    Find people—or if possible, hire them—to help with household chores, yard work, and other jobs. Think about how you’ll handle your regular job. Consider whom you’ll turn to just to talk. This may include professional counseling, a support group, or a close friend. Many hospitals offer support groups for various conditions. You can also find them on the Web or in phone books.

    Keep in mind that finding the right balance takes time. While you want to keep your life as normal as possible, it’s also important not to overdo it. Give yourself more time and a lighter load to reduce the stress on your body and mind.

  • Research the illness.

    While it can be frightening, learning more about the illness will also help you to find and decide on treatments and care. If there’s time, visit bookstores and libraries to learn as much as you can about the condition you’re facing. Also, look for information on Web sites sponsored by reputable government and nonprofit organizations. But when it comes to research, be sure to steer clear of websites selling remedies.

  • Find the right care and treatments.

    After learning about your condition, consider if you should get a second opinion and/or if you need other doctors and medical professionals on your healthcare team. Discuss with your doctor(s) possible treatment options and where you can find them. Consider what care and treatments you may need right away and which ones should come later.

  • Take time for yourself.

    As you work toward better health, try to stay as strong as possible. If your doctor says you can exercise, try to do so. Also strive to eat a healthy diet. Spend time with loved ones, and take small steps to achieve something that interests you. All of this will help you gain a sense of control at a time when you’re feeling otherwise vulnerable.

Being there

What do you say and do when a loved one experiences serious illness? Here are ideas on how to show you care:

What to say

  • Ask: “Tell me how you’re feeling.” This is not only a conversation starter, but a way to help your loved one share what’s most troubling.
  • It’s fine to say: “I don’t know what to say.” Use this statement as a way of reaching out. It may lead to deeper conversation.
  • Listen and acknowledge your loved one’s feelings (e.g., “This must be scary for you.”), but don’t say, “You’ll be fine.” This statement may undermine what your loved one is experiencing.
  • Avoid discussing your bad experiences with illness or those of other people. This may frighten your loved one.

What to do

  • Send cards and notes.
  • Offer to answer phone messages and keep friends and family members informed if your loved one wants.
  • Offer to accompany your loved one to doctor appointments.
  • Volunteer to provide child care, make meals, or do errands.