Lupus and Family Support

Lupus and Family Support

This article offers tips on what to understand about lupus and how you can help support your loved one with lupus.

If someone you love has lupus, you probably are affected by the illness too. Whether it’s your spouse, parent, child, or close friend who has lupus, chances are that lupus touches your relationship in some way.

It can be hard to know how to deal with a chronic illness like lupus. In many cases, you may not understand the symptoms. Your loved one may seem fine one day and then be unable to get out of bed the next. In some cases, lupus can force changes in your established role. This can cause a strain within the family and in other personal relationships.

But it’s important to remember: Lupus is also frustrating for the person who has it. This article offers seven tips on what to understand about lupus and how you can help support your loved one with lupus.

1. Talk Openly About Lupus and Its Impact

“Honest, open communication is the best tool you have in keeping your relationship strong,” says Ann Rosen Spector, PhD, a clinical psychologist in Philadelphia and adjunct professor of psychology at Rutgers University. “But when someone has a chronic illness, people often don’t talk about it. They can be afraid of saying the wrong thing or hurting the other person’s feelings.”

Avoiding discussions about the lupus or your feelings can backfire. It’s important for you to be able to share how you feel. And it’s also important for the person with lupus to communicate honestly about how she is feeling and what she needs.

“Sharing feelings isn’t always easy, especially if you’re feeling hurt or angry,” says Debra Borys, PhD, a psychologist in private practice in Los Angeles. “But it’s important to know that any emotional reaction you’re having to the illness -- whether it’s fear, frustration, or anger -- is perfectly normal. Try to find ways to share these feelings openly with your loved one, and allow her to share too.”

If you need help starting a conversation or talking about difficult feelings, a family therapist may be able to help. “A family therapist can make sure everyone is heard and help foster compassion and honesty in the relationship,” says Spector.

2. Understand Lupus the Illness

Learn all you can about lupus and its symptoms. This will help you better understand what your loved one is going through. “Lupus can be a very difficult disease for others to comprehend because the symptoms can vary so much. But the more you know about lupus, the more empathy you can have for your partner,” says Helen Grusd, PhD, a clinical psychologist in Los Angeles and past president of the Los Angeles County Psychological Association.

Ask your loved one’s doctor to recommend reading material for you. Or ask about reliable sources online. You might offer to accompany your loved one on trips to the doctor.

3. Accept Changes Due to Lupus

When someone has lupus, they often have to make major changes in their lives. They may not be able to do the activities and tasks they were used to doing. Depending on your relationship, these tasks may shift to you.

“The roles in your relationship may change and you need to be prepared for this,” says Borys. “If your partner usually takes care of all the household chores or the children or earns the income for the family, it’s possible these responsibilities may shift to you.”

Change can be difficult, especially when it affects your personal relationships. But accepting the changes that lupus brings can help you move forward.

“I tell patients and their loved ones that you need to let go of what was, and what could have been in order to enjoy what is and what still can be,” says Meenakshi Jolly, MD, MS, director of the Rush Lupus Clinic and Assistant Professor of Medicine and Behavioral Medicine at Rush University. “Once you accept this, it often makes living with lupus a lot easier to handle.

4. Ask What Your Loved One With Lupus Needs

If you’d like to help your loved one in some way, but aren’t sure what she needs, just ask. “It may sound simple, but many people assume they know what the other person needs, so they don’t even bother to ask,” says Spector. “There can be a lot of variation with lupus, so what someone needs help with on one day may be very different than what they need on another day. The only way you will know for certain is to ask.”

In some cases, it can be helpful to suggest specific ways you are willing to help. For example, ask if you can pick up the kids from school or get something from the store. “It can be helpful to make the offer specific and not open-ended, but make sure you ask first, rather than just doing it,” says Spector. Don’t assume that your loved one can’t do something; instead make it a genuine offer of help if needed.

“It’s really frustrating when people automatically assume I can’t do something,” says Adam Brown, 26, who was diagnosed with lupus in 2007. “I like to at least be given the option. And in many cases, I can do a lot more than what people assume.”

5. Offer a Gentle Nudge When Needed

“It’s good to have encouragement,” says Brown. “It can be helpful to hear things like ‘I know you can do this’ or ‘I think it will be helpful for you to do this.’ But you want to be careful not to nag.”

If you sense your loved one is feeling down, suggest doing something fun together. For example you can offer to pick up a movie you both love or takeout from your favorite restaurant. You may also suggest that he join a support group for people with lupus to get additional lupus support and encouragement.

6. Get Support for Yourself

Even though you’re not the one with lupus, you may also need support and encouragement. “You’ll probably experience a whole range of feelings, from fear and anxiety to frustration and anger. These reactions are all completely natural, but it’s important to find support so you have an outlet for them,” says Grusd.

Depending on your role, a support group for caretakers or for the families of those with lupus may be helpful. Some lupus support groups may also allow family members to sit in. “It can be helpful to talk about your feelings in a group situation with others who are going through the same thing,” says Borys. “It helps to know you’re not alone, and that others are experiencing the same feelings as you.”

7. Take a Break From Lupus

“If you’re a caretaker for the person with lupus, it’s critical that you take breaks and have a way to get away from the caretaker role,” says Borys. You may feel guilty if you need time away from the person with lupus, but it’s important to continue to take care of yourself, for both of you.

“You need to find ways to refuel so you can have the energy to be there for your loved one,” says Grusd. Find ways to nurture yourself, whether it’s going to a movie, taking a walk, visiting friends, or just taking a bath.

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