Family and Friends: For Those Who Care
Chronic fatigue syndrome (CFS), is a serious, yet poorly-understood, debilitating and often disabling condition. Although many people with CFS (PWCs) improve over time, most do not recover fully. For this reason, it's important for people with CFS to have the support of family and friends as they integrate the challenges of living with CFS into their lives.A downloadable version of For Those Who Care Fact Sheet is ideal for distribution to health care professionals, family members and the general public.
The symptoms of this illness are numerous, varying among individuals and even in the same person over time. Symptoms include debilitating fatigue, especially following any type of exertion; markedly decreased energy level; sleep disorders; cognitive (memory and thinking) problems; muscle and joint pain; headache; sensitivities to noise, light, foods, medications and chemicals; gastrointestinal symptoms; depression; mood swings; anxiety; and decreased libido (sex drive).
Early in the illness patients often sleep a lot. As CFS progresses, the sleep disorder changes. People with CFS (PWCs) may have difficulty falling or staying asleep. They awaken unrefreshed, even when they have slept for a long time. Exposure to multiple sensory input such as noise, motion and sound can lead to "sensory overload," irritability and relapse.
Despite a decade of research, there is still no definitive test for CFS. Diagnosing CFS requires a thorough medical history, physical examination, mental status screening and laboratory tests to identify underlying or contributing conditions that require treatment. In 1994, the U.S. Centers for Disease Control and Prevention (CDC) developed the following diagnostic criteria: Clinically evaluated, unexplained persistent or relapsing chronic fatigue that is of new or definite onset (i.e., not lifelong), is not the result of ongoing exertion, is not substantially alleviated by rest, and results in significant reduction in previous levels of occupational, educational, social or personal activities. Four or more of the following symptoms: substantial impairment in short-term memory or concentration; sore throat; tender lymph nodes; muscle pain; multi-joint pain without joint swelling or redness; headaches of a new type, pattern or severity; unrefreshing sleep; and post-exertional malaise lasting more than 24 hours. These symptoms must have persisted or recurred during six or more consecutive months of illness and must not have pre-dated the fatigue.
More than 4 million American men and women have CFS. Adolescents and children get it, too. Although CFS was once believed to be a disease of upper-class white women, we now know that people of all racial and economic backgrounds get CFS.
It is unknown how CFS is contracted. When members of the same family have CFS, they are likely to be blood relatives, although some spouses have also developed the syndrome. This has led scientists to speculate that CFS might have a genetic component.
Effects on the Ill Person's Life
CFS affects every aspect of an individual's life - career, finances, activities, education, self-esteem, relationships, etc. Formerly secure and confident people may lose self-esteem due to lack of productivity, difficulty engaging in pre-CFS activities, trouble keeping up with responsibilities, inability to care for others, weight gain and other appearance changes. These changes may cause friends and family to perceive them as "acting differently" and can often upset the balance in relationships. Although the primary effects of CFS are experienced by patients, secondary effects are experienced by everyone around them.
Effects on Relationships
CFS presents new challenges to relationships and may worsen existing relationship problems. Sudden changes in health and activity levels can make the lives of people with CFS (PWCs) very unpredictable. It is difficult for PWCs to make advance plans when they can't forecast how they'll feel on a particular day. Plans often must be canceled at
the last moment. Because overexertion leads to relapses, previously enjoyed activities must often be altered or given up. This places a tremendous strain on partners and friends. Even when a successful adjustment is achieved, partners
may become frustrated as the illness continues.
PWCs may be unable to work because of the debilitating symptoms and the unpredictability of their health. Financial problems can be a significant relationship stressor, as PWCs often are unable to contribute financially to their families. Plans, activities and dreams may need to be canceled or put on hold. PWCs may become more dependent, more preoccupied with personal needs and less able to fulfill the needs of others.
Abandonment issues, too, are common. Feeling inadequate and unlovable, PWCs may be afraid of losing friends, partners and families. This issue is especially significant for those with pre-existing abandonment fears, and reassurance is vital to their sense of security.
Modifications in the PWCs lifestyle may cause disappointment and frustration for friends and family who must adapt their expectations to fit the unpredictable waxing-and-waning cycle of the illness. Due to lack of understanding, acknowledgment and acceptance by some professionals, insurers, employers, the media and the general public, PWCs may feel the need to "prove" their illness. This should not be perceived as a request for special treatment or attention, but rather as a request for respect, understanding and support, and a need for acknowledgment that they are, in fact, quite ill.
How to Help: General Suggestions
The keys to helping a person with CFS are education, communication and emotional support. If you don't know how to be supportive, ask the PWC for suggestions.
- Educate yourself about CFIDS. Stay informed by reading the CFIDS Chronicle, the CFIDS Association's quarterly publication with articles about research, treatment and coping.
- Validate and acknowledge the seriousness of the illness. Be as patient, caring and understanding as you can be.
- Attend medical appointments with the PWC to show support, take notes, offer your observations and verify reports if necessary.
- Offer to help in specific ways, e.g., running errands, balancing checkbooks, managing finances, helping to fill out disability forms, tracking health insurance claims.
- Enjoy activities together, modifying them as necessary, and talk about fun times you've enjoyed together. Keep plans and expectations flexible to accommodate unpredictable symptom changes.
- Avoid comparing the way things used to be to today.
- Create a "new normal," modifying goals and plans as necessary.
- Keep lines of communication open. Be willing to listen, but let the PWC know when you are overloaded and need a break. Don't let CFIDS-related anger control your discussions. Sick people may overreact, lose
track of conversations or have difficulty expressing their thoughts. Memory impairment may cause PWCs to interrupt ("If I don't say it right now, I'll forget it"). If the interruptions are frequent or distracting, suggest that they jot down notes during the conversation.
- Avoid making well-intentioned comments that may be perceived as insensitive and hurtful, potentially damaging closeness and trust. Examples:
What do you expect me to do about it?
You'll just have to live with it.
If you just _________, you'll get better.
Pull yourself up by your bootstraps.
You can beat this thing if you really want to.
I have a lot of the same symptoms as you do.
- Healthy people do experience some CFS symptoms from time to time, although not as frequently or severely as PWCs. Statements such as, "I get tired, too," and "You're not the only one who's forgetful" may cause persons with CFS to feel that they and their illness are not being taken seriously. Instead, try to word your comments constructively. Examples of helpful responses are:
I'm sorry you're feeling so badly.
I wish I could make it better for you.
I know this is difficult for you.
You're handling this illness so well, but I know it really gets you down sometimes.
What can I do to help?
- Be cautious about giving advice. The PWC needs empathy and validation but may reject well-intended but unwanted advice or attempts at "fixing." Often he or she just wants you to listen.
- Remember: This illness isn't logical. Respect the need to prioritize, to rest, to discontinue any activity at the first hint of fatigue. The PWC may need to change plans at the last minute or refuse to do certain things which may produce fatigue or relapse.
- Contribute to the battle to conquer CFIDS by making a tax-deductible donation in honor of your loved one.
Suggestions for Friends:
Friendships may become strained, may be strengthened, or may dissolve in the face of chronic illness. The
give-and-take in a friendship becomes unbalanced when one person is ill. Many ill people become reclusive
and distant, especially during relapses, as spending time with people requires energy. Since energy is
in short supply, your contact may be less frequent than in the past.
- Recognize that although the person may seem "normal" when you're together,
you may not see the relapse which follows activity. Many people with CFS want to function
at their best when with their friends, but privately pay a price later.
- Your friendship is needed now more than ever. Show that you care.
- Discuss feelings of rejection and try to work through misunderstandings. Ask questions about things you don't understand. Discuss options and set ground rules for continuing the friendship: Will there be less contact? Who will call whom? Will it be clear when he or she needs to end a visit or conversation?
- If you have doubts about your ability to continue your friendship, examine the reasons for this: Fear of contagion? Anger about postponed plans? Tired of hearing about complaints and symptoms? You may be able
to solve these problems together and continue the friendship with mutually agreed-upon changes.
- If you are unable to continue your relationship, express this in a straightforward, yet caring manner, rather than simply disappearing. Let the person know that he or she is not the problem; the illness is.
Suggestions for Partners:
Being married to or in a romantic relationship with a person with CFS can be extremely challenging. Keep in mind that your support and love are needed more now than ever before.
- Allow the PWC to do as much as possible (without overdoing) to maintain a sense of independence and capability.
- You may experience feelings of guilt, frustration, helplessness and impatience. You may feel burdened and overwhelmed with additional responsibilities. You may feel helpless and even guilty at your inability to make him or her well. It is normal and natural to feel disappointed, impatient and even cheated. It will help to discuss these feelings with the person, a friend or a professional counselor.
- Enjoy low-energy activities together such as watching videotapes; cooking; reading aloud; playing video games, word games or board games; listening to music; going for a drive; having a picnic in
the back yard or in bed; giving or receiving a massage; or using computer news, e-mail and bulletin board
- Keep plans tentative whenever possible. Formulate alternate plans in case the PWC is too ill to participate in certain activities.
- Decreased energy leads to decreased sexual stamina, so sexual activity may be less frequent and less vigorous. Discuss this with your partner along with sexual modifications and alternatives.
- Touch: hug, hold hands and exchange other signs of affection.
Suggestions for Families:
- Be as flexible as you can, altering family roles and responsibilities as appropriate.
- Don't add to the PWCs guilt by reminding them what they are no longer able to do for
you. Instead, express your gratitude that they still have much to offer and that they continue to be important and loved.
- If there is more than one ill person (with CFS or with another illness) in the family, avoid symptom contests. Comparing symptoms or rate of recovery isn't productive.
- Dealing with CFS in a family is never easy. Give yourself permission to try various solutions to problems, working together as a team.
- When relationship problems arise, constructive problem solving techniques should be employed to prevent destructive arguments. Seek professional help from a psychologist, psychiatrist, counselor or social
worker if you are unable to solve relationship problems on your own.
Suggestions for the Caregiver:
- Take time for yourself and your own needs. Recognize that as the PWC experiences losses, so
do you: loss of predictability, financial security, shared responsibility and the loss of the person as you once knew him or her. Your own grieving process is necessary so that you can accept the illness more easily, adapt to changed circumstances and move forward. Rid yourself of unwanted guilt for your inability to fix the PWC. When you are unsure about what would be helpful, ask! You are not expected to be a mind-reader, and giving unwanted help or
advice may cause resentment. Give yourself credit for being there to help someone who appreciates your support and assistance beyond measure.
Be sure to identify and attend to your own needs while caring for the person with CFS. Continue to include him or her in your activities and plans when possible. Communicate frequently and productively. Continue to enjoy your own friends and activities; do not put your life on hold. Take good care of yourself; to meet another's needs, you must first take care of your own.
You may obtain additional educational materials about CFIDS from your library, local support group and the CFIDS Association of America. Above all, thank you for caring.
Thanks to Katrina Berne, PhD, author of Running on Empty, for writing this piece on behalf
of the CFIDS Association of America.