How to Support Someone with Lupus

Learn how to support someone with Lupus. Plus, what to say and what NOT to say, including ideas & examples of how to support them!

I’ve talked a lot about my connection to Lupus by sharing my brother Zack’s story. Watching him go through his first flare up and eventual Lupus diagnosis, sparked my desire to create Revive Jewelry. It was such an incredibly painful situation and over the years since, I’ve watched him deal with issue after issue. He motivates me to keep pushing and advocating for expanding Lupus research and funding. It is important and we need it, the millions of people dealing with lupus worldwide deserve it and we won’t stop this mission until we discover a cure. 

What is Lupus?

Lupus is a complex autoimmune disease that can be a challenging and unpredictable condition to manage, which is why support from friends and family is crucial. If you have a loved one with lupus, you can play a vital role in helping them cope with their condition and lead a fulfilling life. In this blog post, we'll explore how to support someone with lupus and be a source of strength and understanding in their journey.

How to Support Someone With Lupus

1. Educate Yourself

One of the most important steps in supporting someone with lupus is to educate yourself about the condition. Lupus is not well understood and its symptoms can vary widely from person to person. Learn about the disease, its common symptoms and its impact on daily life. This knowledge will help you empathize with your loved one and provide better support.

✅ DO: Read and learn from reputable, medical resources with a good track record and scientifically backed articles.

🚫 DON’T: Get your facts from laypeople, like your cousin’s friend or neighbor down the street. If you hear something from a friend, or even take things from this blog, although we will never represent that we are giving medical advice and do our best to fact check, definitely seek out the appropriate outlets in this regard and do your own level of research.

2. Be an Active Listener

Lupus can be physically and emotionally draining for those who have it. Be a compassionate listener and let your loved one express their feelings and concerns. Offer a non-judgmental and open space for them to talk about their struggles and triumphs. Sometimes, all a person with lupus needs is someone who understands and listens.

✅ DO: Validate their feelings by saying something like, “I hear you and it makes sense for you to feel this way.”

🚫 DON’T: Say “I know how you feel.” Unless you also have lupus, you really don’t have an understanding of how your loved one feels. Keep it supportive and choose your words wisely.

3. Offer Practical Help

Lupus symptoms can be debilitating and tasks that were once easy may become difficult. Offer practical help with everyday activities, such as grocery shopping, cooking or house cleaning. Be mindful of their energy levels and physical limitations and offer your assistance accordingly. Even small gestures like running errands can make a big difference.

✅ DO: Make specific offers instead of vaguely saying, “let me know if you need anything.” Ask if you can get them some groceries or pick up their kids from school or take them to an upcoming appointment.

🚫 DON’T: Belittle a person by offering help over and over again. If you’ve offered to help with cooking and cleaning and your loved one has denied your help, accept that at this time the offer is not needed. Try again in a few days and maybe they will accept then.

4. Respect Their Boundaries

It's crucial to respect your loved one's boundaries. Lupus can be unpredictable, with symptoms that flare up and subside. Some days, they may be more capable than others. Be understanding when they need to rest or cancel plans due to their health. Showing respect for their limitations demonstrates your unwavering support.

✅ DO: Keep asking them to hang out no matter how many times they have to cancel plans. This shows that you care about them no matter what and will continue to include them despite the limits they endure.

🚫 DON’T: Guilt trip loved ones for canceling plans. They are not canceling because they don’t want to see you. It has nothing to do with you actually, so be understanding and kind.

5. Attend Medical Appointments

Accompany your loved one to medical appointments when possible, if they want you there. This can be comforting for them and provide you with a better understanding of their treatment plan. It's also an opportunity to ask questions and get clarification from healthcare professionals.

✅ DO: Be a good note taker and listener, but don’t interject or ask your own questions until your loved one’s questions have been answered first.

🚫 DON’T: Pester them to bring you. Medical appointments are private and they should only bring you if they want you, not because they feel obligated.

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6. Be Empathetic

Empathy is a key element of providing emotional support to someone with lupus. Understand that they may feel frustrated, anxious or even depressed at times. Be there to offer a listening ear, a shoulder to lean on and reassuring words. Your understanding and empathy can make a significant difference in their emotional well-being.

✅ DO: Give hugs if your loved one is amenable to it and show them emotional support by saying something like, “thank you for sharing your feelings with me. What you’re going through sounds upsetting.”

🚫 DON’T: Say, “it will get better.” There’s no cure or specific treatment for Lupus, so saying that just shows that you don’t really understand and it’s not helpful.

7. Encourage Healthy Living

A healthy lifestyle is crucial for managing lupus. Encourage your loved one to maintain a balanced diet, get regular exercise and manage stress. You can even participate in these activities together to provide motivation and companionship. 

✅ DO: Offer to cook a healthy, anti-inflammatory meal or suggest a low impact, shaded walk outside.

🚫 DON’T: Suggest activities where there is a lot of sun exposure. This can trigger flare ups and will show that you didn’t take the time to learn about their diagnosis.

8. Advocate for Them

Sometimes, individuals with lupus may feel overwhelmed when dealing with doctors, insurance companies or other institutions. As a supportive friend or family member, you can advocate on their behalf, helping them navigate the healthcare system, seek accommodations at work or school and ensure they receive the care they need.

✅ DO: Proper research to make sure you’re reaching out to the right person or outlet to make the change.

🚫 DON’T: Start helping and then drop the follow up attempts. Rarely will something change or be fixed on the first attempt, so if you’re going to help, make sure to follow through until it is rectified.

9. Offer Emotional Support

Living with lupus can be emotionally taxing. Offer emotional support by sending thoughtful messages or notes. Be available for them when they need to talk or simply share a laugh. Your emotional support can lift their spirits during difficult times.

✅ DO: Send handwritten cards in the mail or drop them off when you visit.

🚫 DON’T: Share anything that makes fun of people with lupus.

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10. Give a Small Gift

You can show your loved one that you care by sending a small gift to express your support in a tangible way. Make sure to put a lot of thought into your gift to ensure it will be well received and convey the message you want to your loved one.

✅ DO: Choose something meaningful and helpful.

🚫 DON’T: Give medical equipment, supplements or other health related items.

Consider A Gift That Encourages Strength and Gives Back to Lupus Research

Each piece from our Support Lupus Research Collection is based on a cell image of lupus, specifically the image is Vacuolar Interface Dermatitis or butterfly rash. This is a common side effect in patients with lupus. Since there's really no such thing as a "lupus cell," this is the closest we can get to representing it. We use this unsuspected beauty from the cell image to create positive change by using 10% of gross profit to fund research for a cure with our donations.

We donate to Lupus Research Alliance (LRA), which guarantees that 100% of the donation we send them goes directly to funding their research initiatives, grants and programs. We gladly & proudly support their mission to, “prevent, treat and cure lupus through medical research.”

Support your loved one’s battle and help other lupus warriors with a purchase from our unique jewelry collection by clicking below to shop now.

Supporting someone with lupus is a testament to your love and friendship. Your understanding, empathy and help can make a significant difference in their quality of life. By educating yourself about the condition, listening actively, respecting boundaries and providing emotional and practical support, you can be an invaluable source of strength and comfort in their journey with lupus. Remember that your unwavering support means the world to them.

If you like this article and would like to stay in the loop with information like this and learn more about Revive Jewelry, please join our mission to change the world one piece of jewelry at a time by singing up below!

All content on this website, including medical opinions and any other health-related information, is for informational purposes only and should not be considered to be a specific diagnosis or treatment plan for any individual situation. Use of this site and the information contained herein does not create a doctor-patient relationship. Always seek the direct advice of your own doctor in connection with any questions or issues you may have regarding your own health or the health of others.