Print

by Priscilla Larson

In response to a questionaire, 30 persons with Myalgic Encephalomyelitis/Chronic Fatigue Syndrome (ME/CFS) or Fibromyalgia (FM) or both, shared their pain and passion, their coping skills and their hope for the future as they wait for a cure.

PWCs (Persons with Chronic Fatigue Syndrome) suffer with an extremely long list of potential symptoms, overwhelming fatigue being the bottom line. Because the symptoms vary hour to hour, patients are often misunderstood, thought to be hypochondriacs. Doctors don't like to take on patients who never get well; friends tire of someone who is always sick. Because PWCs usually look well, people frequently comment on that, giving the patient the feeling that, as several participants reported, "I feel invalidated."

When asked "What they would like well people to know", the participants in the survey expressed their need to be believed, understood, loved, and assisted in the following ways:

In responding to the following questions, the participants have shared their creative coping skills, their heartfelt longings, and insights and suggestions on how best caring friends and family can help.

List the most helpful ways that well persons have related to you by what they said or did

What are the most hurtful ways persons have related to you?

Regarding hurtful comments: Belittling the illness by the uninformed is hard on patients. Not being taken seriously can lead to several reactive attitudes that hurt. "We need compassion, not condemnation," one PWC wrote.

Also, regarding the abuse some take when parking in the handicap spaces even when they have a registration to do so, the public needs to realize that all handicaps don't show. Think of persons who have heart ailments and breathing difficulties when walking. A PWC may be spending her entire energy quotient for the day to go into one store to do an errand.

What is the most difficult aspect of being chronically ill?

In these responses we see the pangs of loneliness and the fear of further losses in relationships and property.

What would you like well persons to know?

Because PWCs usually look so well, people often comment on that as if to reassure the patient. Patients sometimes take it to mean that you don't believe that they are sick. Better to say something like, 'It must be hard for you to feel so lousy when you look so well." That shows real sensitivity.

While a few participants in the survey have become comfortable asking for help, most find it difficult and appreciate specific offers.

Like most people, chronically ill persons would rather be the server than the servee. They would rather be involved in meaningful work than lying at home alone.

What is your best coping tip to pass on to others?

PWCs who cope best seem to be those who take control over their decisions and circumstances, stay in touch with a support system, forgive those who don't understand, learn to ask for help and give it to someone else in any way they can, build up their faith and practice it while accepting their limitations and live creatively within their imposed boundaries.

Dr. Charles Lapp of Charlotte, North Carolina cautions patients to truly grasp the concept of limited energy. "It's like money in the bank," he told the audience when speaking at Newton Wellesley Hospital. "You can take it out and use it as you wish, but when it's gone, it's gone! It takes a long time for PWCs to replenish the chemicals in their cells that make energy."

Sometimes, for a special occasion that we just have to attend, we will extend ourselves willingly and pay the price of days in bed for having gone but it was a conscious choice.

In what ways do you help yourself?

There is a ceiling on what ill persons can do for themselves. They desperately need the involvement of others in their lives.

Joni Eareckson Tada, author, artist, and musician who is a quadriplegic and is the president of JONI AND FRIENDS, a ministry to disabled persons, says "No one should have to suffer alone."

Is there anything else you'd like to bring up?

To make a donation or offer your services contact the Massachusetts CFIDS/ME & FM Association.