Strength in Numbers: Live Better Knowing You Aren't Living Alone
Strength In Numbers
Live Better Knowing You Are Not Alone
By Mary Dixon Lebeau
For Venetia Thompson, that day in 2004 started like any other. "I was running around as usual, trying to manage the office and put out the chapter newsletter, when I heard the phone ring," she says.
Thompson is board chairman of the Delaware Chapter of the Lupus Foundation of America (LFA), and although she didn't know it then, she was being called to witness a metamorphosis—and she would be the catalyst for change.
On the phone was Christine Dycio, who was diagnosed with lupus in 1989. She was huddled in bed in her pajamas, where she had been for most of the past five years. Before her diagnosis, she was a successful businesswoman running a family catering business and small restaurant, but injuries from a car accident in 1995—coupled with her lupus symptoms—overwhelmed her. She eventually retreated to her bed, comforted only by its safety.
"But the price of that safety was isolation," Dycio says. "That particular day I was experiencing a lupus flare. I was sitting in bed, feeling sorry for myself. I knew I had to find help. It was time to stop crying in my soup."
So Dycio made her way to the computer and looked up LFA's Delaware Chapter and forced herself to dial the number. Thompson answered that call. "I could tell immediately she needed to connect with someone," Thompson recalls.
Dycio was still hesitant. "Venetia was so bright and cheerful, I considered hanging up."
But Dycio held on-and reached out. Thompson has lupus as well, and the two talked about the disease's effects on their lives, and then shared a good cry.
Thompson told Dycio about the upcoming LFA Advocacy Day program in Washington, DC, and asked if she would like to participate.
Dycio then felt something click. "It was like a lost part of me, the part that used to act in theater and be involved in local politics, was stirred awake," she recalls. "I used to work on campaigns and knew some of the Delaware representatives, so I volunteered to write letters."
But Thompson had an even better idea. "You're not going to write. You're going to go!" she said. Then, to seal the deal, she added, "I'll be over in half an hour."
And, just as promised, Thompson appeared at Dycio's door and the two sat on the bed and began planning her future.The plan included participating in support groups and volunteering as well as attending the annual LFA gala. Listening to Thompson's plans, Dycio felt more hopeful than she had in years. "Emotionally it was unbelievable. Venetia gave me something to look forward to."
"With lupus, I lost my sense of self-worth," she continues. "You don't look sick, and people may think you're faking. They just don't understand."
In that first hour, though, Dycio knew she had found someone who did understand.
First, Find Yourself
Just as Dycio did, most people living with a chronic illness soon learn it sometimes takes more than medications and doctors to feel better. Lupus can be emotionally and physically draining, and you must be confident and strong despite the myriad challenges.
It's important to first come to grips with your diagnosis. Learn all you can about lupus by reading about it and talking with your doctors. Be careful with Internet websites, though. It's better to get information from the LFA (www.lupus.org), government websites like the National Institute of Arthritis and Musculoskeletal and Skin Diseases (www.niams.nih.gov), or medical sites such as MedlinePlus (www.medlineplus.gov).
Knowing what to expect in the coming months can help ease some of your fears. You might feel stronger just learning that thousands of people with lupus manage their symptoms and enjoy full lives. Discovering all you can about lupus will also help you know exactly what you can and cannot do. This is when you look to others for help.
Experts say it's important to build your network of family and friends who can offer support when you need it most. In the early stages of learning about lupus, having family and friends around can be emotionally lifesaving.
"Having a support system in place can be essential during periods of change," says Robert H. Phillips, Ph.D., founder and director of the Center for Coping on Long Island, NY. "The beauty of a support system is knowing you can reach out at any time for any reason."
Finding Your Circle
Most people living with a chronic illness find that partners, family members, or close friends are their biggest source of comfort and support. Family and friends often give them all they need.
For others, though, family and friends may not be enough. Some people with lupus want to talk to those who are walking in their shoes-people who know about the bad days, how to live with the pain, or how to cope with chronic fatigue. For that you need to talk to someone else living with lupus.
Before starting your search, figure out which type of relationship is most comfortable for you. Some, like Dycio and Thompson, thrive in a one-on-one relationship or "buddy system." Others may prefer a group setting for a blend of personalities and interests.
If you think a buddy is best for you, Phillips advises speaking to your doctor to see if he or she knows someone in a similar situation who wants to be matched.
"The doctor won't be able to give you another patient's contact information, but can pass along your number if you give permission," he says.
Also, consider following Dycio's method and contact your local LFA chapter to see if there are upcoming activities where you can meet people.
Traditional support groups are excellent places to find others with lupus. These groups meet regularly to share experiences, ask questions, and lend an ear to members who may be having a tough time. Members need not speak or share their personal stories unless they feel comfortable doing so. Some groups also invite healthcare professionals to speak and offer sound advice and tips on coping with a chronic illness.
What should you expect if you attend a group meeting? "Come with an open mind," says Phillips. "I usually tell my patients to come at least three times before deciding if a group is for them."
Phillips recalls a woman who came to one of his lupus support group meetings, took one look, turned and left. "I caught up with her and asked her why," he says. "She said she saw a woman in a wheelchair, which had always been her worst fear. What she didn't know was the woman in the wheelchair didn't have lupus; she was there to support her husband, who did."
So check your fears and expectations at the door to get the most out of each meeting. "You'll feel empowered because you're in a position to ask questions to improve your day-to-day living," says Phillips. "You can bring up issues of concern to those who have faced similar things."
Lupus support groups have been formed nationwide and there's one common theme: You'll leave knowing you're not alone.
Dee Rapinchuk, 64, of West Chicago had an advantage when she was diagnosed with lupus at age 28. "I was a registered nurse, so I had some medical knowledge," she says. She soon realized that knowledge would be a key to continuing her life with lupus, so she attended a medical education meeting in October 1985.
What she learned there changed her life—even though it wasn't what she expected.
"A woman in the audience was crying while the panel of doctors spoke," Rapinchuk recalls. "Then a psychiatrist said there was a great need for support groups." His message—and the woman's need—touched Rapinchuk, who was already fielding calls from others who sought her expertise about lupus.
At the time, there were no lupus support groups in Illinois, and Rapinchuk thought she'd start one when her three children were older. But she received a call from someone who couldn't wait.
"A woman with lupus called," Rapinchuk says. "She was depressed and suicidal, and as I spoke with her, I could see she responded to having someone reach out. I asked if she would be interested if I started a support group."
Her response was immediate. "Would you? Could you?"
True to her word, Rapinchuk contacted local LFA offices and asked for tips and suggestions. She also recruited attendees by placing signs in doctors' waiting rooms.
There were six people at the first meeting-including the young woman whose call spurred Rapinchuk to action. The group, called "Living With Lupus," has grown through the years and still meets once a month.
"Many lupus patients have a deep sense of isolation," says Rapinchuk. "If they join a group, they realize others are dealing with the same issues. They receive more than information. They receive hope."
Of course, sometimes support is needed outside of the four walls of a group meeting room. That's what inspired Penny Wolf, facilitator of LFA's Piedmont Chapter in Charlotte, NC, to create "The Care Crew."
Wolf founded the patient-peer support group when a member of her regular support group passed away. "We didn't even know she was in the hospital," Wolf says. "I was really upset we didn't know."
After talking with her group, she decided to create a support system that would pair patients with other patients or, when necessary, with family members or friends.
"When we become aware of someone in a really rough period, we assign a support person," says Wolf. "This group has lupus patients as caregivers, not just care receivers." The 20-member Care Crew also has eight members who do not have lupus, but are willing to help others who do.
One recent call for help came from the ex-boyfriend of a young woman with lupus who attended the University of Charlotte. She was in the hospital emergency room, scared and alone, and her family was many miles away.
"I called the mother of another young girl with lupus," says Wolf. "She immediately said, 'I'm on it,' and rushed to the hospital. She sat with the young woman for several hours, holding her hand, answering questions, and acting as her mom away from home."
The Click That Cares
The LFA has a network of chapters that offers links to group meetings nationwide. But if you can't attend meetings in person, help is still out there—and it may be just a keyboard click away.
"While it's hard to get a hug, see a smile, or hear a laugh online, the feeling of being supported and listened to certainly can be duplicated by an online group," says Jody Noble, president/CEO of the LFA, Northwest Ohio Chapter.
Noble launched the chapter's online group two years ago in an effort to expand the traditional group to people in her chapter area, which covers 27 counties in Ohio and all of Michigan. Noble's husband, Mike, created and maintains the group's chat room, where they "meet" once a month for conversation and presentations by guest speakers.
Virtual groups have many advantages, says Noble. "The person seeking help doesn't have to leave home. This can be especially beneficial for single parents, someone who's not feeling well, or someone who's had a long day at work and doesn't want to spend time driving to and from a group meeting."
An added bonus, says Noble, is that it's easier for the group to book guest speakers because they can do presentations from anywhere. For anyone interested in starting a similar online group, Noble is quite willing to help; call the chapter's office at (888) 335-8787.
Ready To Soar
Throughout the country, support groups, care crews, and buddy systems are there when you need them. Reaching out for help may seem like one of the hardest things you've ever done, but if you take that step, you just might find yourself ready to fly high again.
For Dycio, that is exactly what happened. Several days after their initial meeting, Thompson returned to pick Dycio up for the LFA's Advocacy Day. "My jaw literally dropped," Thompson says. "I couldn't believe the transformation."
Inspired by her "lupus angel," Dycio decided to get a haircut and facial for the first time in a long time, and got dressed in one of her nicest outfits.
"It was a real metamorphosis," says Thompson. "My reaching out made her realize there was more to life than what she was doing."
Dycio agrees. "She was there when I needed her, and that made all the difference."
Be A Leader
You can check the LFA website to find a group in your area (www.lupus.org/support/groups), but if there isn't one nearby, why not blaze the trail yourself? Here are a few tips on how to start a group of your own:
Gather information about other kinds of support groups. You can often find announcements on hospital bulletin boards or newsletters. Try to attend a meeting to watch and borrow ideas. There are several good books on starting your own group, too, such as Effective Support Groups, by James E. Miller (1998, Willowgreen Publishing).
Find a convenient place to have your meeting, such as someone's house, a church, library, or community center.
Decide on the best time of day to hold meetings and how often you want to meet.
Advertise for members. Post fliers at your hospital, churches, barber shops, beauty shops, and area schools. Word of mouth is also beneficial, so ask your doctor to refer other lupus patients.
Choose topics: At your first meeting, have a brainstorming session or just get to know each other and share your stories.
Bring in the professionals. Invite your rheumatologist to speak at a future meeting.