Helping Those with Chronic Illness

We can apply the basic principles of helping no matter what an individual’s condition is, but we can be even more effective when we know a person’s specific challenges. People with the same illness often experience different problems and different emotional responses.

If a person with a chronic health impairment is willing, one effective way for Church members to learn about the person’s condition is to talk openly about it in a class or group meeting. Trained volunteers from health organizations will gladly help explain chronic conditions and answer questions, and family members can help, too.

The best learning, however, takes place one-on-one. Jewel Buys of the West Bountiful Utah Stake had her colon removed several years ago. “I like it when people talk to me about it,” she says. “I’d much rather people ask questions than pretend nothing is wrong.”

Laurie Thornton, who has had diabetes since her teen years, concurs. “Most people are not offended by a sincere question,” she says. “My advice is to get to know people so you can learn what their needs are. Ask about their problems, and discuss what helps and what doesn’t help. Most of all, just treat them as normal.”

One month after Laurie was diagnosed as a diabetic, she attended Young Women girls’ camp. When she felt awkward receiving her insulin shot in public, an understanding leader suggested she seek privacy in a car. Laurie gratefully did so, but when she looked up from preparing the shot she saw faces pressed against the windows. “I realized then that my friends were just curious,” she says. “So I pretended the shot was tremendously painful, and they laughed. After that, taking a shot before meals was just something I did.”

Some experts say that more than five thousand rare diseases exist on the planet today. Uncommon symptoms, lack of medical research, and long periods of incubation or remission can delay the diagnosis and treatment of these illnesses for years. Controversy over new or rare diseases often erupts: some doctors, for instance, don’t consider chronic fatigue syndrome a valid diagnosis. These difficulties only add to the burdens of those affected.

Tourette syndrome is a hard-to-diagnose condition that causes people to twitch, make strange sounds, repeat phrases they’ve just heard, and sometimes utter obscene words. These behaviors are caused by neurological and chemical interferences that prevent a person’s system from processing information properly. People affected with Tourette syndrome often have above-average intelligence, but their unusual symptoms may cause others to doubt their mental stability.

One mother of a son with Tourette syndrome tells a tragic story. “Our neighbors wouldn’t let their children play with any of our children, let alone our son with Tourette syndrome. Kids would follow our son around, mimicking his gestures and calling him Twitchy and worse. He quit going to church because it was so unpleasant. No one took the time to understand that his strange movements and sounds were involuntary. Someone in our ward even said he was possessed.”

Another young man with Tourette syndrome began showing symptoms of the illness when he was four. “I didn’t have a single friend outside my family until I was sixteen years old,” he says. “The guys in my priesthood quorums were all right in church, but at school they were just like everyone else. I was the weird guy in the corner screeching and making clicking sounds in my throat, not to mention jerking. Besides that, my medication made me gain weight. Weird and chubby is not a good combination for junior high school.”

This young man’s story has a fortunate ending. After he finished high school, his symptoms began to disappear. He served a mission and graduated from college, and now he works with the Tourette Syndrome Foundation to help others cope with and understand the disease.

As we strive to bear one another’s burdens, we need to draw close to the Spirit so we can be blessed to know how to help. Besides educating ourselves about people’s chronic ailments, we need to show empathy and compassion. For instance, because individuals with chronic health impairments often appear healthy, sometimes others expect too much of them. A person’s degree of pain or incapacitation can vary from day to day, so we need to be sensitive to the fact that for that person, planning and committing to responsibilities might be difficult.

When we understand what our brothers and sisters with impairments are suffering physically, we can better comprehend what they are going through emotionally. One woman who is in constant pain said that she appreciates it when people greet her by saying, “It’s so good to see you!” instead of, “How are you feeling?” She explains: “I don’t like to either have to lie and say ‘I’m fine’ or recount my aches and pains, which is depressing.”

Asthma sufferer Toni Shippen observes that it doesn’t help when people express blanket optimism to try to cheer her up. “For me,” she says, “things may never get better. They may get worse. A hug, just listening, an expression of love, telling me it’s all right to feel the way I do—things like that help. Sometimes I just need to cry, and I appreciate someone who lets me.”

Small courtesies make a difference to those who suffer from chronic health problems. For instance, people with arthritis in their hands or arms appreciate gentle handshakes. Mike Maudsley, now learning to deal with chronic fatigue syndrome, explains the subtleties of his condition: “My body has become very sensitive. Negative emotions drain what little energy I have. I’ve learned that I can’t get angry or even think critically of others. If people around me start getting negative, I have to leave.”

Another woman with chronic fatigue syndrome reports that for two years she wasn’t able to attend Church meetings. She was delighted when the sacrament was brought to her at home. “I had missed the warmth and feeling of partaking of the sacrament,” she says.

Such small services are appreciated, particularly when the receiver senses that we are offering the service out of genuine love and concern. Whether we are providing a meal, weeding a garden, giving someone a ride to a doctor’s appointment, or just keeping a person company, we should give of ourselves with love. When inexperienced youths perform a service, older priesthood holders and adults may wish to accompany them to make sure they are sensitive and nurturing to the people they visit or serve.

Eleven-year-old Zac Johnson of the Jewell Ward in Lakewood, Colorado, has epilepsy. His mother, Kathy, reports that members of their ward have been very understanding and helpful. “One returned missionary, not a home teacher or primary teacher, stops by to give Zac rides on his motorcycle, take him to ball games, and so on. That makes Zac feel great.”

Surgery has left large scars that reach from the nape of Zac’s neck to his forehead, and from ear to ear. At school Zac is teased, but at church the other children understand and treat him well. “Parents and teachers have told Zac’s peers what is wrong with Zac and helped them to see that he is just like they are in most ways. This has helped a great deal,” Kathy says.

Many times, we can help individuals and families without asking or being asked. Mike Maudsley reports: “My neighbors and people in the ward have been wonderful. One brother trims his lawn and then does mine. He sprays his weeds and then mine. He never asks. He doesn’t like to be thanked. He just knows it needs to be done and does it. Many have helped us like that. Although it hurts not to be able to do it myself, it is a great emotional relief to see things done.”

Sometimes, however, we need to ask if we can help. For instance, a simple phone call can determine an appropriate time to visit someone who isn’t able to leave his or her home. Don’t give up if people say no the first few times you offer—they may need to overcome a past negative experience or the fear that they are imposing on you. Offer specific times and services—you may mean it when you say, “Call me if you need anything,” but most people will never take you up on it.

We should give our help in the most natural way possible. Laurie Thornton suggests: “When someone in your ward has a problem like my illness, diabetes, others can thoughtfully serve refreshments that include sugarless food, without calling attention to the fact.”

Dr. Christopher Jackson, a rheumatologist and an associate professor of medicine at the University of Utah, says we should encourage those with chronic health problems to get proper medical attention. “Especially in the case of arthritis,” Dr. Jackson says, “people tend to pass along home remedies that may not be harmful but that keep sufferers from getting medical help that could alleviate many of their symptoms, especially if they get help early.” Family and friends also can accompany people with chronic health impairments to self-help courses and support groups.

People with chronic heath problems have wonderful talents and abilities. Elder James O. Mason of the Seventy, retired head of the United States Public Health Service, reminds us: “If we are going to make the most out of society, we must give every opportunity to others to make the contribution they can. Sometimes it only takes medicine or a piece of equipment or encouragement to let them soar to unbelievable heights. Don’t diminish their abilities by not providing the support and encouragement they need.”

Consider a few luminaries who have faced chronic health problems. Samuel Johnson, the man who wrote the first English dictionary, had Tourette syndrome. Others with chronic illness have included writer Ernest Hemingway, inventor Thomas Edison, and singer Ella Fitzgerald with diabetes; baseball great Joe DiMaggio, writer Eudora Welty, and dancer Juliet Prowse with arthritis; and baseball player Greg Walker and actor John Considine with epilepsy.

When we learn about our brothers and sisters with chronic health impairments and seek the Lord’s guidance in helping them, little miracles frequently happen. People with chronic impairments can experience great spiritual development as a result of their trials, and those who “bear one another’s burdens” and “comfort those that stand in need of comfort” (Mosiah 18:8–9) can be blessed as they serve in love.

Help people with chronic health problems by:

1. Learning about the problem from the person, the family, or a health organization.

2. Offering specific help, such as a ride to the doctor.

3. Doing needed and helpful tasks anonymously, such as mowing the lawn or shoveling snow.

4. Serving with love and cheerfulness.

5. Keeping in touch through notes, phone calls, and visits.

6. Adapting Church programs and schedules so that chronically ill members can attend and serve how and when they are able.