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My Personal Experience: How to Support a Friend with Lupus

January 11, 2024

“So I saw the doctor last week about those rashes I told you about, and they figured out that I have lupus.” 

When my college best friend, Srijana, broke the news over our favorite fried pickles at Buffalo Wild Wings that day, I was honestly shocked. 

Her skin had been having a strange reaction to the sun, and she’d had pink splotches on her face that made her feel self-conscious – nothing a long-sleeved shirt and a little makeup couldn’t temporarily conceal to the rest of the world. How could a trip to the dermatologist snowball like this? One doctor’s visit led to another… and after months of playing detective, we were left with this. A life-altering diagnosis. 

At the time, I didn’t know anything about lupus, but Srijana assured me that it was something people lived long, full lives with, on the right medication. Neither of us knew her vibrant life would be cut short because of lupus complications. 

If I could go back and do it all over again, of course I would. For one more day to eat samosas and watch Korean movies with subtitles (don’t ask). Or to drive around singing along to Jay Sean, drinking our Bubble Tea. And these are the things, in my experience, that I learned about how to be a good friend when someone you love has lupus.

 

  • Educate yourself. One of the best things you can do when your friend is diagnosed with lupus is to learn everything you can about the disease. You can read books like Chronically Fabulous by Marisa Zeppieri, articles on the Lupus LA blog written by true experts, people who are living with lupus themselves, and even dive into clinical peer reviewed research, if you feel so inclined. Lupus is multifaceted and expresses itself differently in each person. The more you understand the disease, the better able you will be to support your friend no matter what symptoms they face.

 

  • Believe them. One of the hardest things about lupus is that it’s often invisible. If your friend has to cancel plans because of a flare, believe them. The pain and exhaustion lupus brings can be a heavy burden to bear. Be a safe person that your friend can get real with about their symptoms, and encourage them to trust their body’s signals for rest or intervention. And when they can’t make it to your party? Check in on them, and be sure to invite them to the next one.

 

  • Tell them how you plan to help. Offering to help your friend in any way you can is wonderful, but telling them specifically how you plan to support them is even better. Whether you drop off their favorite take-out meal on a bad day, offer to clean their house during a demanding work week when they just don’t have the extra spoons of energy to spend, or let them know you are their on-call driver for doctor’s appointments, being specific in the ways you intend to help is always most impactful.

 

  • Talk about lupus. Never shy away from speaking to the elephant in the room. Lupus is a part of your friend’s life now, and the more openly you talk about it, the more comfortable they will feel sharing their journey with you. Meet them where they are in processing their diagnosis – you don’t have to try to find a silver lining on days when lupus really stinks. You can hate lupus together. Remind your friend of who they are, lupus or not – strong, resilient, and incredibly loved.

 

  • Be wary of germs. In our post-pandemic world we are all more aware of germs than we’d like to be, but for your friend with lupus it’s important to be cautious when it comes to sharing germs. Because it’s an autoimmune disease, lupus can weaken your friend’s immune system, making them not only more susceptible to getting sick, but also at risk for having more serious complications. Don’t brush off those cold symptoms – stay home, wear a mask, have your coffee date on ZOOM – do what feels right to protect your friend.

 

  • Don’t talk about lupus. Lupus may be a permanent house guest for your friend, though certainly an unwelcome one, but you don’t have to invite it into every conversation. Your friend still loves the same shows and books, hobbies, professional ambitions, and more. They still have the same family drama to dish about (unfortunately), and care deeply about you and your life too. Hold space for who they are apart from lupus, and let them be a friend to you too. 

Written by Heather Rose Artushin, LISW-CP


Heather Rose Artushin, LISW-CP is a writer, lupus advocate, and licensed clinical social worker determined to make a difference, one word at a time. She contributes to Motherly, Psychology Today, and the Post and Courier, among many othersYou can visit https://heatherrosewriter.com to learn more.