Lupus & You is a free educational series where people with lupus and their family and friends can learn more about the latest in lupus research and managing the disease.

Our recent Lupus & You on managing relationships featured practical strategies for talking with family and friends about lupus from registered social worker and lupus warrior Jodie Nimigon-Young, MSW, clinical psychologist Dr. Nicoletta Skoufalos, and professional volleyball player and daughter of a lupus warrior Kaz Brown.

If you missed the event, you can watch the video here:

Our Health Education Specialists have also compiled answers to attendees' most commonly asked questions. The insights and guidance offered by our webinar speakers can help you navigate the complexities of relationships while managing lupus.

How do I explain to a 9 year old that I cannot do all the things we used to do before or spend as much time with them?

Kaz Brown, a professional volleyball player whose mother has lived with lupus for the past 20 years, recommended two books, Mommy, What is Lupus? by Nadria Givens and My Special Butterfly by Kelli Roseta, to help explain to young children what lupus is and how it can affect someone internally as well as the parent-child relationship.

Here are some ways to explain to your child why you may not always be able to do certain things together:

• You know I love to play with you, and whenever I can, I will. But having lupus means that some days I’ll only be able to sit in the shade to watch you play, or coach you from the sidelines.  
• I know it’s not easy to understand, but lupus is making me feel really tired today. Let’s think of something that we can do together inside.

How do I navigate relationships with children?

Kaz shared that, growing up, her mom always put on a brave face, especially with four young children to care for. But the mystery around her mom’s health made things challenging for Kaz. She acknowledged that deciding how to talk about lupus with a young child can be difficult but encouraged parents to be open with their children about health issues from an early age.

Kaz also emphasized how vital communication has been in understanding what her mom is dealing with.

“Honest and open communication has really strengthened our relationship,” she said. “I’ve learned so much about lupus, and doing my own research has helped. I gather questions, bring them to my mom, and listen as she shares her personal journey. That’s made a huge difference for us.”

As far as relationships with adult children, being honest about what you need (as a person with lupus) and how you can feel supported and what that looks like for you, is also important. For caregivers, she recommends learning about lupus and how treatment and medications affect people differently.

“As someone who is a loved one of someone who has lupus,” Brown said, “to be as involved as possible when it comes to doing your own research, volunteering, just kind of staying up to date on things that are happening within the community has been something that has helped my mom and me a lot."

How do I cope with lupus when my caregiver is not available?

Dr.  Nicoletta Skoufalos, Ph.D. Clinical Psychologist, recommended reaching out to others who may be available to listen to you when your caregiver may need a break. She also encourages people to search for support from their community, which can be in person or online.

“Make time to openly speak about your grief in a safe space,” Skoufalos said. “I think sometimes we underestimate the power of just talking about the grief itself. So we've acknowledged that there's some grief, and now it's time to find someone to talk to. It doesn't matter who it is, as long as you feel safe and open. It can be any trusted person, a friend, a family member, a therapist, a grief counselor, a support group. Just find that person to talk to.”

In addition, it is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person. When people start to see themselves primarily through the lens of their illness, it can feel like the disease and its limitations are overshadowing other important parts of their identity. People who view themselves as having a chronic illness are accepting the reality of lupus as one part of their identity.

You may find a source of strength and growth in the knowledge that you have a chronic illness but also a life beyond it. You may realize that living with your illness has made you more understanding of others whose lives are affected by sickness and pain. You may feel a greater appreciation for things you used to take for granted, such as the love and support of family, or hobbies, work, and activities that give you pleasure.

“We can still learn how to live a meaningful life,” Skoufalos said, “despite having to cope with a lot of grief throughout living with this disease.”

You may also find that your life and your identity are improved and enriched by sharing your experiences with others who have lupus, whether you volunteer with a local lupus support group or chapter, or help people with lupus in your community by listening or lending a hand.

You may even discover that sharing the knowledge of what to expect from a life with lupus, and what can be accomplished despite lupus, can be a powerful lesson for yourself as well as for others. For additional recommendations, read our coping with lupus guide.

Where can I find support outside my family or community? 

Jodie Nimigon-Young, MSW RSW, suggested online resources that can offer support. The Lupus Foundation of America can help you identify some of them. Your doctor may also have knowledge of patients who may be open to connecting one-on-one. Communicate your needs so you can find a community for yourself.

Below are steps you can take to build your support system:

1. Reach out to get the help you need. A strong support team will have people who can help in different ways. However, it’s not necessary, or likely, that everyone in your support network can meet all of your needs. The important thing is that you can count on these people when you need them. 

   The individuals who make up your support network can include:

   Family members 
   Friends 
   Caregivers
   Neighbors
   Coworkers
   Lupus support group members
   Medical team 
   Therapist or counselor 
   Teachers and school instructors
   Faith based community members
    

2. Identify what you need and set up several types of support which may include:

   Emotional Support
   Physical and mental wellness
   Task-related support 
   Support groups 
   Family support 

3. Ask for help. It may feel like you are giving up your independence, but most people want to help. Although they may not completely understand what you’re going through, they want to be supportive. It is important to understand how to make your needs known to people who can assist you. Learning to ask for help, and learning to accept help that is offered, will get easier over time. Be specific with your request. If possible, try arranging a barter exchange. 
4. Connect. You can get started by getting connected with LupusConnect, an online community launched by the Lupus Foundation of America that provides people with lupus and their loved ones a safe and understanding space to share experiences, find emotional support, and discuss ways to manage the disease. 

5.  Share. You’ll probably find that you share different aspects of what you’re going through with different people. That’s why it’s so helpful to have a variety of people to talk with and places where you can speak and be heard.

   People’s emotions are very complicated when they’re dealing with chronic illness. Regular meetings with an objective person, such as a trained counselor or therapist, can be very helpful. You may also want to engage with people who understand lupus and know what you’re going through.

   “A lot of us talk about wishing people in our lives understood more about what the experience of dealing with lupus is like,” Skoufalos said. “So through advocacy, you can help the people in your life and in the wider community understand that more.”
    

6. Volunteer. Volunteerism offers social support benefits because helping others can make you feel better about life in general. One good option is volunteering for a Lupus Foundation of America chapter or a support group. Think about the social causes you are passionate about and the skills you have to offer. Check out an organization’s website for volunteer opportunities, or call the local office and ask how you can help

Above all, remember: A strong social support network will help you to stay connected — with family, with friends, with community.

When is it appropriate to tell someone I am dating about my diagnosis?

Jodie stated that there may never be a right time to tell someone about your diagnosis because it depends on several factors. You may need to take it upon yourself to plant some seeds, such as making it clear you are taking medications or sharing that you are living with a chronic condition. Consider sharing bits and pieces or you can decide to share everything at once depending on what the relationship is based on and how the person is responding to you at the time. Read recommendations on talking to others about lupus.

Ultimately, your health is personal, and it’s up to you how much you choose to share. But remember, you should never feel you have to hide who you are or how you feel. By sharing your experiences openly when comfortable, you invite understanding and support, building relationships that respect and empower you beyond any challenges.


 

The Lupus Foundation of America and our health education specialists have answered some of your most common questions. The provided answers are for educational and information purposes only. Consult with your doctor/health care team for medical advice.