"A real friend is one who walks in when the rest of the world walks out."

These words ring true for Johnni Congleton. Five years ago when she was diagnosed with lupus, it seemed like most of the world walked out.

“I lost a lot of friends because they couldn’t handle how sick I was,” Congleton says. But then, in walked Joshua Burrows. They met at a Bible study class at the University of North Florida in Jacksonville. As soon as Burrows heard about her disease, he jumped in to offer his support. 

“He gave me a hug and he told me, ‘Whatever you need, I’m here.” He wasn’t exaggerating.

Not only did Burrows offer emotional and financial support, but when Congleton lost her hair after taking a powerful chemotherapy drug used to suppress lupus symptoms, he went to great lengths to show his solidarity. “He sent me a picture with his head shaved, and he told me I wasn’t alone in my fight,” she says. “For three and a half years, he had a bald head because I couldn’t grow hair.”

Burrows’ action made a huge impact on Congleton, but he downplays it. “I don’t think I’ve done that much,” Burrows says. “She’s gone through something I can’t even fathom, so my gesture feels small.” By shaving his own head, he says, “I was trying to make it clear that I’m in this for the long haul, because she doesn’t have a choice to be.”

Find the friends who are willing to help

When you’re diagnosed with a chronic disease like lupus, you quickly discover who your true friends are. “A couple of friends may disappear, but the ones who remain are capable of offering the support you need,” says Francine Rosenberg, PsyD, clinical psychologist with Morris Psychological Group in Parsippany, New Jersey.

When other friends backed off, Lisa Jones knew she could still count on Carin Chrisman, who’s been there for her around the clock. “When I have a flare, it’s so intense and so unbearable,” she says. “There have been many nights when I’ve called her literally in the middle of the night. She’s come and picked up my kids, dropped them off at her house, and driven me to the emergency room.”

Jones and Chrisman, who both live in upstate New York, have known each other since high school—a friendship spanning more than 20 years. They’ve been together in good and bad times, seen each other through relationship ups and downs, and cared for each other’s children (each has two daughters). But despite the longevity of their relationship, Jones still marvels at her friend’s dedication. “Who does that? Just gets up in the middle of the night and drops everything?”

How can my friends support me in coping with lupus?

Friends who want to help don’t have to go to extreme lengths, like shaving their head or losing sleep. Even little things like cooking dinner, driving to appointments, or helping out with household chores can make a dramatic difference.

“Sometimes it’s the simple things, like calling and saying, ‘I’m driving by a restaurant. Do you need anything?’ Or just checking in because I haven’t talked to anyone in three days,” Andie Luton says of her friend Anna Rossitto. They’ve been friends for nearly two decades, since their days at Chemeketa Community College in Salem, Oregon. Rossitto has been there to lean on through the worst times of Luton’s illness.

Good friends will understand your need to lie low sometimes

“A friend is a support system—someone who understands what you’re going through,” Rosenberg says. “Friends give you an opportunity to talk about your illness and the impact it has on you, and validate what you’re going through.”

A good friend can also help you laugh through your tears. When Jones is having a flare, Chrisman tries to keep the mood light. Once while waiting together in the emergency room, they had to share a room with a patient who seemed to have come unhinged. “He was yelling at the nurse, saying, ‘I’m going to kill you!’ Carin was sitting there, and she just looked at me and said, ‘I’ll be the first one out of here.’ I was like, ‘Thanks a lot! You’re going to leave me with him?’ ” Jones laughs.

“We giggle at the awfulness and move on,” Rossitto says of her relationship with Luton. “We stick our tongues out at the bad things in life.”

Yet even at the time when you need friends most, you may withdraw from them. “One reason is that symptoms like pain or fatigue will limit your activity,” says Rosenberg. “Coping and dealing with a chronic condition on a daily basis can also contribute to depression, and one of the symptoms of depression can be isolation.”

But maintaining a base of supportive friends doesn’t mean that you have to go out with them when your energy is lacking. A good friend will understand your need to lie low sometimes.

You don’t even need to see each other in person. Keep in touch over the phone or email, through social media sites like Facebook and Instagram, or via a video chat such as Skype or FaceTime. “Stay on your friends’ radar and remind them that you may not feel well enough right now, but there will come a time when you can enjoy their company,” Rosenberg says.

The rewards of friendship go both ways

The value of having someone to see you through your worst and sickest times can’t be measured. “There have been times when I’ve wanted to give up. It just gets too hard,” Congleton says. “It’s like Josh knows, and he’ll send me a message at the right time reminding me to keep fighting. He’s a great friend to have in my corner.”

Luton adds, “Anna’s just a tiny little redhead, but the amount of strength in that girl is amazing. Every good thing she celebrates, and every bad thing she’s there to hold my hand and cry with.”

For the people who devote their time and energy to caring for someone with lupus, the rewards are just as immeasurable. “I’ve seen Johnni at her worst, when she couldn’t be around people and she was in a wheelchair and everything had been stripped away,” Burrows says. “That helped me to realize that so much of what we focus on and care about probably isn’t that important. And it caused me to want to make sure I spend the proper amount of time focusing on what is lasting and what is relevant.”

“Andie’s physical needs might make [our relationship] seem one-sided to [other] people. But what she gives back is more precious than gold. There’s just nothing that I wouldn’t do for her,” Rossitto says.

How to support a friend with lupus

It can be hard to understand the needs of someone with a chronic and often disabling condition like lupus, especially when the signs aren’t always obvious. “It was very difficult for me to get my head around my friend Andie Luton’s disease, her pain, everything that she loved and that was slipping away from her,” Anna Rossitto says.

Clinical psychologist Francine Rosenberg’s advice is to learn as much as you can about the disease, “so you can really understand what the person is going through.” When you offer to help, be specific. “Let me bring you dinner tonight” is more likely to get accepted than “Let me do something for you,” she says.

While you want to be supportive, you also don’t want to give so much that you burn out. Set boundaries and save some of your energy for your own family and life. That way, you’ll be at your best when it’s time to help your friend with lupus, Rosenberg says.

“Andie has been very respectful of my time,” says Rossitto. “She says, ‘I need you to take care of you.’ So there is permission between both of us.”

When you have lupus and you find friends you can rely on, ask them for help when you need it. That’s not always easy to do. “I think it’s hard for us lupus patients to vocalize when we need help, because we don’t look sick,” Luton says.

If you feel guilty about asking for help, think about ways you can return the favor. Luton was able to support Rossitto as she worked to overcome a learning disability and complete her degree in early childhood development at Chemeketa Community College. “I would go to meetings at school, just trying to be an advocate for her,” Luton says.

“Andie was instrumental in counseling me to keep moving forward and to keep having dreams,” Rossitto adds. “I need to remind her how important she has been in my life, in boosting my feeling of being capable. It’s just been invaluable.”