Here’s the thing about lupus: It’s probably as misunderstood as it is common. Although about 200,000 Americans have lupus, 63 percent of respondents to a 2019 survey by the Lupus Foundation of America had either never heard of it or knew little more than its name. So odds are, when you finally got your diagnosis, you probably faced a steep learning curve yourself — and now you have to explain your disease to those who care about you.
Looping in your loved ones may seem daunting, but it’s an important step in managing flares and making the most of every day with lupus. “To try to live with lupus on your own without ever having any support would be incredibly difficult,” says Michelle Petri, MD, Director of the Johns Hopkins Lupus Center.
Begin sharing your lupus diagnosis with loved ones by being honest about how lupus affects you and what kind of help you’ll need. We’ve gathered expert and patient strategies to make the conversation easier and help you get the support you need.
Set the Stage
When sharing your diagnosis, it’s important to pick a time when your loved ones can give their full attention. Sit together quietly in an environment with few distractions and start the conversation by saying, “I recently got some medical news I want to share with you.”
San Diego graduate Carly Lemmon, 27, says she faced her first “how-do-I-bring-this-up?” conundrum when she was just diagnosed and dating her now-husband, Carl. “I was really nervous to say anything, and I kind of just blurted out: ‘So I was just diagnosed with lupus, an autoimmune disease.’”
Since then, she has refined her delivery, with a matter-of-fact and confident tone: “So something interesting about me that you and I might have to navigate together is that I have an autoimmune disease called lupus,” says Carly. “The confident tone reassures them that it is okay for them to ask you questions, and in that moment, they hopefully won’t be nervous or afraid.”
It’s common for a loved one not familiar with lupus to ask about how serious it is, including whether it can be life-threatening, says Michelle Petri, MD, Director of the Johns Hopkins Lupus Center. While there is not cure for lupus, the prognosis is optimistic, with nearly 90 percent of people with lupus who follow their treatment expected to live a normal life span, according to the Lupus Foundation of America.
You can assure them that while there is no cure for lupus, there are medications that work to reduce symptoms, disease activity, and help lower the risk serious complications like heart disease and kidney disease.
If your loved one is a child, they may be too afraid to ask but wonder and worry about it all the same. Address their fears head on by saying that lupus is a disease you can control by taking medicine — so as long as you see your doctor for check-ups and take your medicine the way you’re supposed to, you’ll be okay.
Make It Easy for Others to Understand
Start by explaining that “lupus is a disease where the immune system makes a mistake,” says Dr. Petri. “Instead of fighting infection the way it should, the immune system starts to attack normal tissues in the body.”
Carly tells loved ones: “When you get a cold, your immune system fights off that cold. Well, my immune system fights off my own organs and my own skin. The autoimmune disease I have is called system lupus, it’s a chronic condition, and I’ll have it forever unless there’s a cure.’”
You may also have to explain that the skin, joints, and kidneys are commonly affected, causing everything from rash, swollen joints, low blood counts, protein in the urine, and inflammation of the heart and lung lining. Read about lupus symptoms you can’t afford to ignore.
Explain How Lupus Affects You
While lupus is often an invisible chronic illness, it’s likely that friends, loved ones, and coworkers have already noticed you struggling with various symptoms from time to time. Tie it all together for them by explaining “lupus is the reason my joints hurt,” or “lupus is the reason my skin has a rash,” says Dr. Petri.
Carly helps people understand how the disease affects her by saying, “If you’ve ever had the flu, you know how your body aches all over, that’s how I feel almost every day. I also get really tired and get a lot of rashes.”
Ask Them to Be Another Set of Eyes and Ears
Invite a loved one to your doctor visits so they can better understand your diagnosis as well as what treatments and lifestyle changes you need to make to manage your condition. This will also help keep you accountable. “The patient may not take in all the information during their appointments, so having someone there to remind them of the take-home lessons is key,” says Dr. Petri.
Involve Them in Your Treatment
Treatment for lupus can include everything from NSAIDs and steroids to immunosuppressant drugs. A mainstay of treatment is hydroxychloroquine, a medication that reduces flares; fends off the long-term complications, such as organ damage and central nervous system damage; and increases survival. Trouble is, says Dr. Petri, as people start to feel better, they often want to stop the hydroxychloroquine. And that’s where your support system can step in.
Ask loved ones for help by saying, “I want you to know where I’m at with my treatment and help make sure I stay the course,” Dr. Petri says. Many people with lupus are diagnosed in their late teens and early 20s, a time when adhering to medication can be especially challenging. “Having a friend or family member help them get into that is very important.”
While Carly is fully committed to her treatment plan, she counts on her mom for an important weekly task: organizing her medications. “She helped me set up [this drawer] with all my meds in it. We have a little checklist, and we go through it together; it’s helpful to know the support is there, and the task is less daunting, especially when I have lupus brain fog.”
Point Them to Credible Resources
For those who have a lot of questions or are the kinds of people who crave more information when they’re learning about something unfamiliar and potentially scary, encourage them to read more about lupus from trusted sources. Dr. Petri recommends hopkinslupus.org.
You can also ask your rheumatologist for recommendations or for any pamphlets or information they available to pass to loved ones who want to stay in the know. Other sites and resources to check out, in addition to those from CreakyJoints, include:
- Lupus and Allied Diseases Association
- Lupus Foundation of America
- Lupus Research Alliance
- Lupus Chat
Tell Them How to Help You
Carly, who shares her journey on Instagram @ChronicallyCarlz, admits it’s taken her a long time to get comfortable with asking for help. “I constantly battle thoughts that I’m a burden or that people will think I’m lazy. But if they love you, they won’t think those things and would rather you voice it,” she says.
If asking for help remains a struggle for you, Carly has this advice: “Think of yourself as your best friend. What would you want for your best friend? Would you be willing to pick up some groceries? Help with errands? The answers are most likely going to be yes. Ask your circle of people for help when you need it. It gets easier over time.”
Get more tips on how to ask for help without feeling like a burden.
The bottom line: While sharing your health condition and asking for support can make you feel vulnerable, it can also ensure you get the help you need to better manage and live with lupus.
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Ellison K. Living with chronic illness: Why some cope and others don’t. November 19, 2019. https://knowablemagazine.org/article/mind/2019/psychological-effects-of-chronic-illness.
Interview with Michelle Petri, MD, Director of the Johns Hopkins Lupus Center.
Izmirly PM, Parton H, Wang L, et al. Prevalence of systemic lupus erythematosus in the united states: estimates from a meta‐analysis of the centers for disease control and prevention national lupus registries. Arthritis & Rheumatology. 2021;73(6):991-996. doi: https://doi.org/10.1002/art.41632.
Sawah SA, Daly RP, Foster S, et al. Understanding delay in diagnosis, access to care and satisfaction with care in lupus: findings from a cross-sectional online survey in the united states. Annals of the Rheumatic Diseases. June 2015. doi: http://doi.org/10.1136/annrheumdis-2015-eular.1159.
2019 Lupus Awareness Survey Summary. Lupus Foundation of America. https://www.lupus.org/news/2019-lupus-awareness-survey-summary