The Gift of Presence
How you can support those living with chronic illness
Posted February 11, 2011
For many, the most distressing consequence of chronic illness is social isolation. Friends, once plentiful, suddenly stop calling. Family members, unable to understand your physical and emotional limitations, grow resentful and accuse you of failing to “pull your weight. ” Even churches, a supposed refuge for the hurting, tell you they lack sufficient resources to help.
Regardless of how social isolation occurs, the result is that basic needs for intimacy, belonging, and acceptance remain unmet, which often leads to depression, loneliness, and social and cognitive impairments that further exacerbate the isolation.
Unfortunately, the chronically ill have little or no control over their limitations. The onus rests on friends and family members to take the initiative and begin to meet these unmet needs.
Voices of chronic illnesses
Elizabeth Burchfield lives with multiple chronic conditions. Myofascial pain disorder and arthritis force her make a lot of concessions in her life.
”You get lonely,” she says. “You want so much to see someone else but don’t have the energy to even go to church.”
Rennie Ellen Auiler, a cancer survivor who lives with ulcerative colitis and other chronic illnesses, describes the fatigue that comes with chronic illness as completely debilitating.
”Not the tiredness that healthy people experience after a long day,” she says, “but the mind-numbing, crawl-into-a-hole-and die kind of fatigue that never goes away.”
Judy Gann, who lives with fibromyalgia and other autoimmune system disorders, describes her life as a roller coaster.
”I may feel reasonably well one day and be flat in bed the next,” she says.
Symptoms like these make it difficult for the chronically ill to participate in activities others may take for granted. Even simple things like meeting a friend for lunch, going to a movie, or taking a walk in the park can seem daunting to someone living with chronic illness.
Give the Gift of Presence
Rev. Liz Danielsen, Chaplain, and Founder of Spiritual Care Support Ministries, says the best gift we can give to the chronically ill is time. “We need to talk less and be present more, ” says Danielsen. And when we do say something, it is critical we say something that helps, not hurts, the chronically ill.
Experts offer these suggestions:
- I’m sorry you’re hurting. Know that I’m here for you.
- Tell me about your condition. I want to understand how I can help.
- If you’d rather not talk about it, I understand
- I admire your courage and strength in handling your illness. You’re an inspiration and encouragement to me.
- “I understand.” People experience pain differently. Even if you have the same condition, your experience is different from someone else’s.
- “But you look so good!” This implies if you were really sick, it would show.
- “It could be worse.” This invalidates the chronically ill’s experience of pain.
- “Maybe if you took this vitamin… went to see this doctor…or tried this therapy, you would get well. ”
Keep in mind:
- Chronic conditions and illnesses are unpredictable. The chronically ill may feel fine one day but be in bed the next. Allow for last-minute cancellations and change of plans.
- Depression and suicide are more common for the chronically ill than the general population. Watch for depression and seek help if needed.
- The divorce rate is high for the chronically ill. Support the marriage as well as the individual with the chronic condition.
- Life’s challenges are far from simple and require more than pat answers and pithy platitudes. When in doubt, don’t.
The needs of those who chronically suffer are unique. It takes effort and commitment to support the chronically ill. Because suffering is such an individual experience a good rule of thumb is to talk less and listen more.
”It’s sometimes best to put the books aside and just let them teach you,” says Liz Danielsen.
The truth is the chronically ill have a lot to offer. Their experiences give them insight and sensitivity that others may lack. When you meet someone with a chronic condition or illness, why not ask yourself, “What can I learn from this person’s life?”
You might be surprised.
Mary Yerkes is an author, speaker, and chronic illness coach who fosters spiritual and personal transformation in people's lives, especially those living with chronic pain and disease. Like many of her clients, she lives with multiple chronic illnesses, including rheumatoid arthritis, ankylosing spondylitis, and psoriatic arthritis. She is the Chronic Illness Expert for the National Association of Baby Boomer Women. Visit Mary online at MaryYerkes.com.