Dealing with loneliness as a teen with lupus

Lupus Foundation of America

Resource Content

Fitting in isn’t easy for any teenager, but when you have a chronic disease like lupus, it’s especially hard to be part of the crowd. “Being in a small town, no one knew what lupus was,” says Amber Johnston, 20, of Kemmerer, Wyoming, who was diagnosed during her sophomore year of high school.

“My whole life changed,” she says. “I lost some friends.”

Although she tried not to let the rejection get to her, Johnston says it did get lonely. “On some days I went home early because I just couldn’t handle it anymore.”

Elizabeth Yuen was diagnosed with lupus when she was nine. The kids at her northern California elementary school teased her about her steroid-induced weight gain and the hat she always wore to shield her face from the sun. During fourth grade, her best friend suddenly wasn’t allowed to play with her anymore.

“Her parents didn’t understand what lupus was. The mom kept calling it a blood disease. I think they thought it was contagious,” says Elizabeth’s mother, Nancy.

Why lupus isolates

Part of the reason friends pull away is that lupus symptoms like fatigue and pain are difficult to see. “The kids wouldn’t believe me. I would miss so much school, and they thought I was faking,” Johnston says.

“It’s hard to try to explain to people that there’s something serious going on with you when you look OK,” says Thomas Walters, 58, of Atlanta, who learned he had lupus in 2006. Even his wife had trouble accepting his diagnosis, he says. “I don’t know if she was in denial, but she was not as supportive as she could have been, which caused me to feel a sense of isolation.” Her inability to come to terms with Walters’ illness ultimately led to their separation, he says.

Lupus symptoms might be hard to see, but they’re real enough to keep you from social engagements. Rachel Hangad, 23, who was diagnosed with lupus at age 15, says she often had to stay home and rest while friends from Hunter College in New York carried on their lives without her. “I’d see their pictures on Twitter or Facebook the next day—the smiles, the laughs,” she says. “I’d wish I was there. I’d wish I was in those pictures.”

Friends can mistake these absences for a lack of interest. If you don’t tell them why you’re not spending time with them, they might think, ‘You just don’t want to hang with us anymore,’ ” says Shelia Rittgers, M.S.W., clinical social worker and pediatric outpatient team leader at Duke University Health Services in Durham, North Carolina.

Out in the open

People around you won’t be as confused about your condition if you explain the situation to them. “It’s important to educate your friends and relatives about lupus. That includes educating them about your symptoms, which starts with educating yourself,” says Charles Merrill, Ph.D., a clinical psychologist in New York. “You’re also more likely to deal with your own disease better if you understand it.”

If you’re not sure what to say, practice first with someone you trust. “It’s important to get across that sometimes, even when you look good, on the inside you may be tired,” advises Rittgers. “Tell friends: ‘That doesn’t mean I don’t want to be around you or do things; I just need to have more time for myself.’ ”

Walters finds that being honest helps smooth relationships. “I’m very open about my diagnosis. A lot of people, and particularly guys, really don’t share their illness unless they have to,” he says. “When people know what is going on with you medically, that at least gives them some understanding of why you may not do certain things.”

“The one person I was surprised who stuck around was my new boyfriend at the time,” Johnston says. “He was there through it all—and, we’re now newly married!”

A fresh start

Sometimes, even if you’re open with friends, they won’t hang around. Then you might have to form a new social circle. One way would be to locate a Lupus Foundation of America chapter where you can meet people who know exactly what you’re going through.

Elizabeth Yuen, now a senior at San Francisco State University, found like-minded friends at Camp Milagros, a northern California summer program for kids with juvenile rheumatoid arthritis or lupus, run by The Taylor Family Foundation. “She would come back from camp and say, ‘It’s OK that I have lupus because there are other kids with it, too,’ ” her mother remembers. “I don’t think she’s lonely anymore because she now has a support group that she’s made for herself.”

When Walters had trouble finding a men’s support group near him, he started one. “We get together quarterly to do some type of activity—maybe meet at a restaurant, or go to a sports bar or game,” he says. “And we’ll give each other calls periodically just to check in.”

Some days, going out may be more challenging, and you may need to be less social than usual to accommodate your health. “The challenge is to accept what is, and not beat yourself up about it,” Merrill says. If it’s hard for you to get out because you’re too tired, stay connected with friends via Skype, or on social media sites like Facebook and Instagram.

You can also invite your friends to you. “This past summer, instead of going out in the city, I threw a house party,” Hangad says. “I was surprised by the turnout. Everybody came!”

Home is where the heart is

One place to turn when you feel lonely is to those closest to you—your family. “Having a good support system at home can really get you through the day,” Johnston says. When she needed to get something off her chest back in high school, she’d use her mom as a sounding board.

Nancy Yuen has always tried to be there for daughter Elizabeth during tough times. “By seeing that her family is there for her, I think it gives her the strength to meet what’s outside.”

To ease your isolation, you may need outside help. “If you are struggling with serious loneliness and are unable to work your way out of it, find a therapist,” Merrill suggests.

Ask your rheumatologist to recommend someone who has experience helping people with lupus or other chronic illnesses. “If your symptoms of anxiety or depression are very severe or so strong that you have difficulty functioning, you may also want to consider consulting a psychiatrist for an evaluation to find out whether medication might be appropriate,” he says.

Power of positivity

Just because you spend more time on your own doesn’t necessarily mean you’re lonely; having time to reflect on life can actually be good for you. “Sometimes solitude can be healthy,” Rittgers says.

To combat true loneliness when it arises, focus on the positive in your life. “Stop and think about the things that give you joy, the things that revive you, the things that make you laugh,” Rittgers suggests. Make a list of everything you enjoy doing—like taking walks or going to the theater—and try to incorporate them into your life, even if you have to do them more slowly or less often now.

“The way I see it,” Hangad says, “is why waste even more energy feeling bad about yourself? You have to stay hopeful and happy. Some activities that helped me get through this journey (since yoga was no longer an option) included a lot of Netflix, Late Late Show reruns, and cooking. Also, picking up a hobby is definitely a way to get your mind off things.”

It took Johnston some time to come to terms with her disease. “I think finally accepting lupus helped me. And now I educate other people,” she says.

Forever friends

Companionship doesn’t always have to come in human form. Joanna Mechlinski, 34, of New Britain, Connecticut, says one of her closest pals is a miniature poodle mix named Charlie. “I rescued him in 2011, when he was just six months old,” she says. “He had become deathly ill with parvovirus and dumped at a local vet. Happily, Charlie recovered, [and] I became his new mom.”

Mechlinski, diagnosed with lupus in 2003, says Charlie seems to know whenever she’s feeling low, either physically or mentally. “He’ll bring me all his favorite toys and curl up against me. I like to think we have a special understanding, thanks to our medical histories!”

Charlie has also served as a social liaison. “I’ve met a lot of people who I wouldn’t have met otherwise,” Mechlinski says. “People smile, they look at us, children want to pet him, whereas when I used to walk alone, people would not say anything.”

Before you bring an animal into your life, consider your needs and what kind of animal might be best for you. For example, while walking your dog will be healthy for both of you, a smaller dog that won’t pull too hard on a leash might be preferable to a big one. Or, you might opt for an indoor animal such as a cat, a guinea pig, a rabbit, or a bird.

No matter which pet you pick, you can be sure your loneliness will be banished each time you see its furry (or feathered!) face.