This month we have been discussing mental health and wellness when you have lupus in a four-part blog series. This week we are sharing some strategies on talking about lupus and your experiences.

Talking with friends, family and colleagues about living with lupus isn’t always easy. You might wonder how much you should share, or worry how the other person will feel about your daily struggles. Will they see you differently? The answers to these questions will vary greatly depending on the nature of your relationship with each person in your social circle.

While you can’t control another person’s response to your lupus diagnosis, you can decide to set healthy boundaries, prioritize your health and wellness and advocate for your needs in your relationships.

Here are a few examples:

• “I can’t make it to the party tonight, I’m not feeling well...” It’s hard to disappoint the people you care about, but remember, it’s your job to listen to your body and be gentle with yourself. They’ll understand. If they don’t, their feelings and reactions are their responsibility – not yours.
• “I need longer, more regular breaks during my shift to rest.” Standing up for yourself at work is not easy, especially when it comes to advocating for what you need as you navigate a career and living with lupus. It might feel uncomfortable to step out of your comfort zone and ask for more breaks, or more flexible hours, however, doing so is the best way to ensure your success at work and your wellbeing. Under the Americans with Disabilities Act (ADA), employers are required to make reasonable accommodations to help you carry out your job duties. You can find answers to common questions about navigating lupus and the workplace in this resource.
• “I may look fine, but lupus is a serious chronic illness that affects my life in many ways...” Some people are unfamiliar with lupus and its wide range of symptoms, many of which go unseen, but deeply felt. It might feel frustrating, invalidating, or even embarrassing to have someone respond this way when you open up about your diagnosis. Take a deep breath and see this as an opportunity to raise awareness. Sharing a bit of information about lupus can help increase the other person’s understanding, and hopefully contribute to shattering assumptions about often-invisible diseases like lupus.
• “Can you please grab my grocery pick-up tonight? I planned on running errands today, but lupus had other plans.” Asking for help is something many of us struggle with, lupus or not. Admitting when we need help can feel vulnerable, and we might feel we owe the person who helps us and we’re unsure how to return the favor. Let them in – when you invite your loved ones to help you when you need it, you are giving them a chance to be a part of your journey and to show you love in action. This increases your connection. When people say, “I wish there was something I could do,” don’t be afraid to give them something specific to do – drive you to a doctor’s appointment, help with chores, sit with the kids while you rest, whatever you need to feel supported.

Some well-meaning friends may focus intently on how you’re feeling day-to-day, and you might get tired of being treated like glass. It’s okay to let your loved ones know how much you appreciate their thoughtfulness and care and remind them that you are more than your lupus diagnosis. You have passions and interests that lupus can’t touch that you’d love to share with them. You can remind them how good it feels for you to hear about their lives and to be there to support them however you can.

In romantic relationships, conversations about the impacts of lupus can be particularly daunting. In one study, nearly half of women avoided sex because of lupus-related flares, and up to 40% felt that their relationships were negatively affected by the disease.^[1] Fatigue, pain and sensitivity can make physical intimacy a challenge for many people with lupus. Everyone struggles to talk candidly with their partner about sex, but self-advocacy and boundary-setting is important when you’re dealing with lupus, even in the bedroom.^[2]

The words we say matter, especially when we’re talking about living with lupus. Choose words that remind you that you’re in charge while not shying away from the realities of the disease. Don’t be afraid to set healthy boundaries with your loved ones and colleagues, and advocate for your needs as you prioritize your health. Over time, it will get easier to talk about lupus in a way that feels authentic for you.

Authored by:
Heather Rose Artushin, LISW-CP

This blog post and the lupus resources found on the National Resource Center on Lupus are, in part, supported by the Centers for Disease Control and Prevention under Cooperative Agreement Number NU58 DP006139. The contents are solely the responsibility of the developers. Points of view or opinions do not, therefore, necessarily represent official views of the Centers for Disease Control and Prevention or the Department of Health and Human Services.

This blog post is for educational and information purposes only. Consult with your doctor/health care team for medical advice.