In medicine, an illness is called a syndrome when it has varied symptoms occurring simultaneously, without a specific defined cause. Chronic fatigue syndrome (CFS) fits that definition, plaguing patients with exceptional tiredness, pain, mental confusion, and other psychological problems. One constant with CFS is that the people who have it need support, not only from the medical community, but also from friends, family members, and other loved ones, to help them continue with their lives.
Teaching Others to Understand Your Chronic Fatigue
A major problem is that many people don’t understand what chronic fatigue syndrome is and are confused when a loved one is diagnosed with CFS. Allison Bigman, a 45-year-old New Yorker who has had CFS for more than 14 years, knows this all too well. “When I developed the condition, a lot of people in my circle of friends began to disappear,” says Bigman. “The disease changes you, and many people just don’t understand it and can’t handle seeing you that way.”
That’s why it’s important, says Bigman, to seek chronic fatigue support from people who truly love you and to help them undertand what’s wrong with you. That way, they can see that you need their help now more than ever. One critical way to do that, explains Bigman, is to provide them with literature about the condition, whether through books, magazines, or Web sites. A good start is the section of the U.S. Centers for Disease Control and Prevention on chronic fatigue syndrome.
It can also help to have your closest loved ones accompany you on a doctor’s visit, adds Bigman. “Sometimes, if they can hear from a doctor that you are suffering from chronic fatigue syndrome, that will help them accept and start to understand what’s wrong with you,” she says.
How Your Loved Ones Can Help
Once your friends and family have a greater understanding of chronic fatigue and its often unrelenting tiredness, how they can best help you will depend on the severity of your condition and symptoms. Bigman, for example, was bedridden for three years, so she relied on her mother and brother for almost everything. “My brother would do the shopping for me, and my mother would do the cooking and cleaning,” she says. “I eventually had to hire someone to help with cleaning and laundry.” Bigman was so debilitated that she had to be escorted to her doctor’s visits by a loved one, too.
In recent years, Bigman’s condition has improved to the point where she can function more normally, but she still has an occasional relapse, or “crash” as she calls it, and will feel severe fatigue. When this occurs, Bigman relies on a phone tree of people she has set up. “When I need help, I can call them for support,” she says.
Bigman’s family and other loved ones are always close by — it makes sense to build your chronic fatigue support network with people who live close to you.
Connecting With Other Chronic Fatigue Syndrome Patients
Your family and friends can do a lot to support you through your chronic fatigue syndrome, but no matter how much support they provide, they still won’t know exactly what it’s like to be in your shoes. That’s why Bigman also recommends finding a support group of people living with chronic fatigue syndrome. “I attend my support group pretty regularly,” Bigman says.
Ask your doctor about CFS support groups in your area. You can also find resources to help you with your chronic fatigue syndrome on the Chronic Fatigue and Immune Dysfunction Syndrome Association of America’s Web site.
Designate an Advocate for Yourself
While your family and friends can help by caring for you, cleaning, cooking, shopping, and helping with other chores, the truth, admits Bigman, is that chronic fatigue can be so debilitating you also need to designate a loved one to be an advocate — at the doctor’s office, with support groups, and in other important parts of your life. “With chronic fatigue, you’re a shell of your former self, and sometimes your mind just isn’t working like it’s supposed to,” Bigman says. “Having someone who is looking out for you is really important to help you get through the challenging times.”