How to Support Someone with Lupus

Common Areas of Support

As I mentioned earlier, lupus affects everyone differently. What one person struggles with another might not, but for the most part these are some common “areas” where someone with lupus might need help or assistance.

• Driving to and from a doctor’s appointment when he/she is in a flare. These flares can cause severe physical exhaustion.  
• Help picking up medication at the pharmacy.
• Getting groceries. You could help by ordering their groceries online and picking them up. 
• Prepare a meal or have a meal delivered.
• Accompanying them to a medical visit and take notes or act as a second pair of ears (often times, if we are in a flare or having a rough day, we forget everything that was said to us).
• Help with childcare and housework. 
• Organize a meal train when they are discharged from the hospital or have had a procedure. Making meals will likely be a challenge afterwards. 
• Act as a trusted confidant who they can share their frustrations openly with.

Actions Speak Louder Than Words

Over the years, I’ve also learned that being specific is key when trying to ease any burden associated with lupus. While it was nice to hear, “Let me know if you need anything,” from friends and family, it didn’t solve any of the pain or problems I was experiencing.

Don’t make the person suffering come to you with their needs and wants, you should approach them and be very specific about what you’d like to help with. It can be any of the areas we listed above — bringing food, driving them around, or just offering up time to listen to them talk. It was the people who were very specific and said, “I’m grabbing you some things at the grocery store so you can stay in bed,” or “I have free time on Thursday, so I am going to drive you to your doctor’s appointment,” that made the difference.

They Need to Speak Up, Too

But it’s not completely up to you. I also had to learn to speak up and be specific about what I needed. A lot of people have trouble asking for help and sometimes it’s just easier to say, “Okay, thanks” and leave it at that or that everything is “fine.” I had to learn to advocate for myself. Being extremely independent, it was quite difficult for me to ask anyone – even my own family – to do anything for me.

Today, it is the complete opposite. I know how pushing myself past the brink will put me into a flare and knock me down for weeks at times. So, when I feel myself experiencing more symptoms, or becoming more fatigued, I ask for things like meals, or grocery trips, or help with the laundry, etc. I’ve had to learn how to depend more on the people who love me. And, on the days I feel great, I bake them a treat or do something special for them as a way to show my appreciation.

Let Them Know, They’re Not Alone

In addition to the things mentioned above, I would also add to just let that special person in your life know they are loved, and that they aren’t in this fight alone. Because lupus is a fight – every single day. But no matter how hard lupus tries to attack our body, when we have an amazing team of people around us supporting and loving us, it encourages and motivates us to never give up or give in to this disease.