The art of navigating a new friendship while living with lupus

Whether you’re healthy or living with a chronic illness, navigating a new friendship is always a delicate dance. For those of us with lupus (or possibly multiple autoimmune diseases), it can be difficult to explain why we’re suddenly MIA for days, or even weeks, at a time.

Welcome to life with chronic illness, where our social calendar is more unpredictable than a toddler with a crayon. Making new friends can feel like navigating a minefield while blindfolded, but there are ways to make the experience less anxiety-inducing.

I’m grateful to have strong, long-term friendships with people from middle and high school; they’ve been in my life since before my lupus diagnosis. But after moving halfway across the U.S., I began to meet wonderful new people. I was stopped in my tracks when I realized I had to decide the “right” time to share about my illness. I’d meet someone amazing, we’d hit it off, and then, bam! My symptoms would flare up and I’d vanish into the ether. It wasn’t the best way to keep my new friendships afloat.

I’ve given a lot of thought to how I handled new friendships after my diagnosis 20 years ago and how I’m handling them now. Following are some tips that might help if you’re in a similar situation.

Recommended Reading

August 1, 2024 by Patricia Inacio, PhD

Joint pain very common in lupus, affects patients’ life quality: Study

New Friendship Dance 101

When we’re in the early stages of a friendship, it’s normal to wonder when to drop the “I have a chronic illness” bomb. For me, it’s not that I’m embarrassed or ashamed of having an illness; it’s just that it’s a heavy topic to bring up between discussions about your favorite shows to binge-watch and your top playlists on Spotify. But reality checks don’t wait for the perfect moment, and sometimes you have to explain your frequent disappearances. My advice is to start light and casual.

Keep it simple at first. Next time you’re hanging out, maybe over coffee or on the couch with snacks and your favorite new show, you can say something like, “Hey, just so you know, I have lupus. Sometimes it means I need a lot of rest and can’t be as social as I’d like. I just wanted to be upfront with you in case I disappear suddenly, which can happen if my lupus flares up. I want you to know it has nothing to do with you.”

With this statement, or your version of it, you’re not unloading the full burden all at once but setting the stage for deeper conversations later. Their reaction is also a good indicator of their understanding of lupus, empathy, and compassion.

If they seem genuinely interested, go ahead and share more details. Explain how lupus flares work, what your triggers are, and why you might suddenly go off the radar. But remember, this friendship is new. They don’t need your full medical history right off the bat. Think of it like a TV series; you don’t give away all the plot twists in the first episode.

When in doubt, use humor

Humor is a great way to lighten the mood. You could say something like, “Sometimes my body acts like a diva and demands a lot of downtime. It’s like having a really needy roommate who doesn’t pay rent but won’t move out.” That not only makes the situation less awkward, but also offers a glimpse of your humor and personality.

Educate, if …

Chronic illness is an evolving journey, and it’s a beautiful thing when we find friends who want to be a part of that learning process. Sharing articles, blog posts, or even memes that resonate with your experience is a great way to educate without making it feel like a lecture.

However, if someone doesn’t seem genuinely interested, I wouldn’t suggest spending a lot of time trying to educate them. People have their own timing when it comes to accepting heavy topics like illness, and sending a lot of information too soon can overwhelm and cause some to shy away.

The grand balancing act

Balancing a new friendship and a chronic illness isn’t easy, but it’s doable with the right approach. Remember, communication is key. Be honest, be open, and don’t be afraid to let people in. What I’ve learned in the past two decades is that true friends will understand and stick around, flares and all.

Note: Lupus News Today is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Lupus News Today or its parent company, Bionews, and are intended to spark discussion about issues pertaining to lupus.