Sharing the Journey: Friendships & Support

The Sharing the Journey series is by you and for you. In your own words, we highlight the perspectives and personal experiences of people who struggle with lupus each day.

This month, we asked Sharing the Journey participants the following question:

What is something that a coworker, friend, or family member has done to make living with lupus easier for you?

Having a disease like lupus, it can be really hard for others to recognize when you are feeling poorly or actually need help. For me, when a family member or a coworker just randomly asks how you’re feeling or if there is anything they can do to help, [that’s] a huge relief. Always having to voice my struggles or need for help can be exhausting itself, so when they realize it on their own, it is a cause for celebration. – Roxi 

My family has generously done everything possible to make living with lupus easier for me. They are highly aware of my need to rest, eat well, and maintain a stress-free life. Sometimes they are even more proactive then I am, as they constantly remind me about the importance of resting and not overdoing it. I often think I’m invincible and will burn the candle at both ends, but my family constantly checks in on me to ensure that I’m living responsibly and listening to the needs of my health. I’m very thankful and grateful for their loving and nurturing ways. – Victoria

I’m very photosensitive, and I spoke to the person at work that orders things for our office. She was able to get me a filter that goes over the fluorescent light and helped my photosensitivity a lot. I was getting migraines and felt like I was going to pass out constantly, as my workspace was directly under a light. It wasn’t a sustainable issue. I never request accommodations, but this has helped me so much. – Leslie

Attentiveness has been one of the greatest blessings that my friends have given me in the past few months. A few weeks ago, I had a health scare related to my lupus, and it was greatly upsetting. When I returned to college, my closest friends simply listened to my story and empathized with my anxiety and frustration. Just knowing that they cared about me enough to patiently pay attention to everything I told them truly meant the world to me. I try not to talk about my lupus too much, because I don't want people to think of me as inhibited in one way or another. So when I do talk about my disease, it is really important to me and special when my friends listen kindly and respectfully. I often don't want their advice or take on the issue; I simply enjoy their commiseration and support. – Becca

Ever since I [was] diagnosed with lupus at the age of 12, my friends and family have made accommodations for me, [and] I am about to be 20 years old now. My family is very supportive, and they try to help me [be] stress-free so I don’t flare. My mom also makes healthier renal diet meals for me so I’m not eating a lot of salts and such. – Kyra

Communicating about the support you need

Sometimes, even the people you’re closest to don’t realize that you need assistance. If you look ok, they may not know you don’t feel ok.

Are you comfortable asking for help? These tips can help you communicate with the people in your life about how they can support you.

• Be specific about what you need. Support comes in many forms, including accommodations at work or school, help with chores, or just listening. What would make a real difference for you?

• Try not to feel guilty about asking for help. It’s ok to accept help and just say “thank you.”

• Be honest about how you’re adjusting to life with lupus and the changes you’re experiencing. Talk about these changes with close family and friends and ask how they’re adapting.

Want more ideas? We have advice for loved ones of people with lupus that you can share with them. And if you want to build up your support system, we have a step-by-step guide.