From the Archives: Spring 2009 issue of Lupus Now
But You Don’t Look Sick ... Helping others understand your lupus
by Mary Dixon Lebeau
In January 2003, Kelly D. Kelly’s mother treated her to a facial for her 19th birthday. Three days later, the Tenafly, NJ, teen developed symptoms of lupus, including a facial rash and fatigue. "Maybe it was the UV light," Kelly, now 25, speculates. "Back then, I was a teenager, and typically vain. I was upset that something was going on with my face."
By March, Kelly was diagnosed with both systemic and discoid lupus. Although her doctors in New York were sure about the diagnosis, Kelly found it difficult to explain her illness to her college friends and roommates. "I tried as best I could, but I just couldn’t explain it in a way they could understand," Kelly says. "We were all young and had never even considered the possibility that I could be dealing with a chronic disease."
Kelly remembers that her friends would say, "Oh, Kelly’s just moody" or "Kelly’s acting funny," when others would ask why she wouldn’t go out. "I tried to explain that my lupus made me really tired, but they just thought I was being overdramatic.
"I always have had a flair for the dramatic, so in retrospect I can understand them thinking that," Kelly admits. "Still, while it was happening, it was very frustrating."
Many people living with lupus recognize the frustration Kelly faced. Most of the effects of lupus take place internally, and often there are few external signs. "Besides the rash, I still looked the same, so my friends expected me to act the same," Kelly says.
"They would say I was just tired from school," she says. It was a reasonable conclusion, as the college junior was taking 22 credits in a stressful political science program at Virginia Union University in Richmond, VA.
Even when they tried to be helpful, Kelly’s friends misunderstood what she was going through. "I lost my appetite, so they worried I had an eating disorder," says the 5-foot-2-inch Kelly, whose weight fell to just 88 pounds. "We had heard many warnings about eating disorders through our lives. No one was telling us about lupus."
"My friends even called my mother and told her I had an eating disorder," Kelly remembers. "They just didn’t understand it wasn’t that I didn’t want to eat. I had no appetite and felt nauseous if I ate."
Finally, Kelly came up with a solution. She invited her friends to come to the doctor with her. "I needed them to hear I wasn’t just acting or being moody," she says. After learning about lupus from a medical professional, Kelly’s friends finally came to a new understanding of lupus -- and of Kelly’s difficulties in feeling as good as she looked.
Inside Out
Kelly’s complaint is common among people living with lupus. "But you don’t look sick" is often a well-meaning friend’s first response upon learning about the lupus diagnosis. It may be meant as a compliment, but for those dealing with the extreme fatigue, the stress, and the plethora of emotions that come with that diagnosis, the comment falls short of the supportive validation they seek.
Kelly’s solution -- taking her friends with her to the doctor so they could hear about lupus from a medical professional -- is a good one, says Al Herzog, M.D., a Hartford, CT-based psychiatrist and member of the Lupus Foundation of America’s Education Committee. "It can be very helpful to have friends and family members come in with the person to a medical appointment," he says. By attending an appointment, the well-meaning friend or family member can hear about lupus from the medical authority directly, which will affirm that their loved one is, indeed, sick—even when appearances suggest otherwise.
"Let’s face it, our family and friends want to be helpful," Herzog adds. "But the longer you’re sick, the more anger they may feel." This anger may stem from the way people approach most illnesses. After all, most people get sick, then get better. Once a person is diagnosed with lupus, their loved ones may expect them to be treated and then be well. When this doesn’t happen, they may feel frustrated or angry -- quite similar to the feelings the person with lupus is experiencing.
"Communication is key," Herzog says. "Even though it may be frustrating, don’t close off from a person who cares about you. Stay actively engaged with each other. Explain your feelings, but keep in mind they may not be totally understood. Still, anyone who loves you will respect how you feel if you take the time to explain.
"Life has given you a lemon, no doubt about it," Herzog adds. "You want to make the best lemonade possible. Remember that you’re the key. The way you behave will influence how your family reacts."
He suggests the book What Happy People Know by Dan Baker, Ph.D., and Cameron Stauth for common-sense suggestions on making the best of bad news -- and helping those around you do the same.
Appearances Can Be Deceiving
Lola Prince* was a model, part of the world where popularity and paychecks are based on a person’s outward appearance. "I made a pretty good living looking good," says Prince, now an Indiana stay-at-home mother of four.
As a model, Prince learned to be a skilled make-up artist and later used this knowledge to successfully work in the cosmetology field. Today, she uses her make-up skills to cover the redness on her face and the rash on her arm -- telltale signs of her lupus, which includes involvement of internal organs. (Prince was diagnosed in February 2008.)
When her friends hear of the diagnosis, they react with disbelief. "People just say, ‘What? There’s no way you’re sick,’" Prince says. Even her husband and her father couldn’t understand how Prince could look so good but feel so bad.
"They know me so well, yet kept telling me I was fine," Prince says. "Their reaction was really frustrating for me."
Getting her husband to understand is challenging. "My husband tells me, ‘Mind over matter. If you don’t mind, than it won’t matter.’ That makes me want to hit him upside the head, but of course I don’t because my hands already hurt," she jokes.
Instead, she finds that a heart-to-heart helps the situation. "I had to realize my husband was having a hard time accepting that something was wrong with his wife," Prince says. "I had to get to the point where I could sit him down and tell him how I really feel, both physically and emotionally. He listened, and that helped." Then she directed her husband to the Lupus Foundation of America’s website at www.lupus.org, so he could read more about what she was dealing with and connect with the LFA’s large online community. Prince returns to serious conversation and the Web site whenever she feels her husband needs a reminder.
The Other Side of the Fence
Chuck Mesec, D.D.S., knows how Prince’s husband feels. In 2001, he was working on blending two families -- his children from a previous marriage, his stepchildren, and the baby he and wife Becky had together -- when the family learned that Becky had lupus.
"Having been to medical school, I was familiar with the symptoms of an autoimmune disease, and I had a good idea that was what Becky was dealing with," says the Burlington, WI, dentist. "Her diagnosis confirmed this, and we had to start dealing with the challenges lupus presents."
The unpredictable nature of the disease presented the family with its first challenge. "It gets very frustrating. Becky has good days and bad days," Mesec says.
Another challenge Mesec faced was explaining the situation to the couple’s six children. They were understandably concerned and confused and didn’t understand why their mother wasn’t up to doing the things she did before.
"I tried to explain what was going on and encouraged them to do what they could to help Becky feel better," Mesec says. "We were all grieving the loss of the old Becky, but she was having the hardest time reconciling the changes." Mesec said that the kids rallied around their mother, learning as much as they could about lupus and making small changes to keep her positive. "The kids used to call for Becky to come read to them," he says. "Now they will snuggle in bed with her and read to her."
"The experience has pulled us together. There’s been a lot of laughing, a lot of closeness, a lot of love," he says.
More Than Growing Pains
As difficult as it is for children to understand a parent’s illness, coming to terms with their own lupus is even more difficult for young people. "The issues school-aged children face when they have lupus are always difficult," says Thomas J.A. Lehman, M.D., chief of the division of pediatric rheumatology at Weill Medical Center, Cornell University.
Lehman, author of It’s Not Just Growing Pains: A Guide to Childhood Muscle, Bone, and Joint Pain, Rheumatic Diseases, and the Latest Treatment, recommends educational reading material to help friends and family members understand what the child is going through. He also suggests family members attend doctor appointments with the child to get a better understanding of lupus and its implications for the child’s life.
"Counseling isn’t really necessary in most cases," Lehman says. "However, children should be able to discuss any situations with their doctor and their parents. Support groups for children will also help provide peer support."
As Prince’s husband discovered, the Lupus Foundation of America is also a key resource. The website can link you to articles, experts, and a community of people who have traveled this road before and share their experiences on the message boards and on Facebook.
Taking Control
"I’m at a point in my life where I’m focused on getting myself better," says Kesha Dan, 31, a Denver, CO, college student who is currently taking classes online.
"I have lupus. It’s a fact of life for me, and I’m learning to live with it. But I just wish my insides felt as good as my outside looks," says Dan.
Dan started feeling ill in January 2007. Doctors first thought she was suffering from allergies, but she didn’t respond to treatment. She constantly felt tired and lost 12 pounds in a week and a half. Finally, in June 2007, Dan was diagnosed with lupus.
Dan experienced difficulty dealing with co-workers who didn’t understand just how exhausted she was. "I’d say I was going out to the post office on my lunch break, but instead I would go home for a nap," she confesses. "I would oversleep and get in trouble, which caused more stress, which of course made things even worse."
Dan, who is planning a 2010 wedding, believes education is key to getting the support you need. "I read as much as I could about lupus so I could explain things well," she says. "I’ve also learned not to listen to every little comment that’s made. Keep the supportive people around and don’t let other people’s negativity get you down."
She has also built a support system of others with lupus, many of whom she met online through Facebook and other social networking groups. Interacting with others who share her experience helps Dan keep a positive outlook.
"I pray a lot, and I read the Bible to make me feel better. I find a reason to smile every day," Dan says.
Prince shares Dan’s belief in a positive outlook -- one that will rub off on the people around you. "You can’t control your life, but you can control how you live your life and how you interpret your life," she says. "Realize that you know yourself better than anyone. Validate your own feelings.
"Every day I wake up and choose to live," Prince says.
*Name has been changed