Living Well With Lupus: Tips for Loved Ones
Living with lupus comes with challenges — not just for the person with lupus, but for their loved ones, too. If someone you care about has lupus, there are ways you can support your loved one and take care of your own well-being.
Support a loved one with lupus
There are several types of help that a person with lupus might need, from emotional support to help with daily activities. And the types of support a person needs might differ from one week to the next.
Here are a few ways you can support a loved one with lupus:
- Provide emotional support. Having lupus can be a difficult experience. Check in with your loved one and ask how they’re feeling. Letting them know that you care and are willing to help can make it easier for your loved one to manage their lupus.
- Help out with housework or childcare. Lupus symptoms like pain and fatigue can make it difficult for people to do their usual activities. You can help by offering to take care of daily tasks — like picking up groceries, doing chores around the house, or taking children to after-school activities, for example.
- Offer support with health care and insurance needs. Some people with lupus may need help keeping track of their medicines and medical bills. Or they might appreciate moral support at doctor’s visits. Ask your loved one what would be useful to them.
- Put together a care plan. If you’re involved in your loved one’s day-to-day care, it’s a good idea to put together a daily care plan with information about their needs and what you typically do for them. That way, if another caregiver needs to step in when you’re not available, your loved one’s care can continue as usual.
- Take care of their finances. In some situations, caregivers may need to take over managing their loved one’s finances (or take a larger role in financial planning, if they share finances). It’s helpful to get a full picture of your loved one’s assets, debts, and expenses and to try to stick to a budget. Working with a financial planner, if you can, can be a big help.
Support your child with lupus
Parenting a child or teen who has lupus brings unique challenges. Children may struggle to understand what having a long-term illness means for their daily life — or why they need to avoid certain activities (like playing outside in the sun, for example). Understanding the challenges your child is likely to face, both during childhood and into adulthood, can help you support them.
Here are some ways to support your child or teen with lupus:
- Let your child know that lupus doesn’t define them. Teach your child that, while lupus is sure to affect their everyday life, it’s not the most important thing about them. If they’re feeling overwhelmed about lupus, emphasize things they can control.
- Ask them about their feelings, then listen carefully without judgment. Tell them that there are no right or wrong feelings to have. Encouraging your child to talk about how they feel can help them learn to express their feelings in a healthy way. Keep in mind that sometimes, children act out if they don’t have the right words to describe how they feel. Talk with your child’s doctor if you notice them withdrawing or getting upset regularly.
- Engage them in conversations about their health. Ask your child about their symptoms and encourage them to ask questions at doctor’s appointments. Involving your child in their health care early on can help them accept their illness. And keep in mind that for teens, dealing with a chronic illness while going through adolescence can be stressful. Encourage your teen to find healthy outlets, like journaling or speaking with a school counselor or therapist.
- Make time for family fun. While navigating the challenges of lupus can be overwhelming for families, it’s important to make time for family activities when you can. Spending time together that doesn’t center on a child’s illness benefits parents, the child with lupus, and other siblings in the family.
- Encourage them to take breaks. Homework, sports, clubs and friends can place a lot of demands your child. It is important for children and teens with lupus to take breaks. By allowing time for rest and recovery, young people with lupus can better manage their symptoms and help avoid flares. This is also a chance to teach your child about the importance of self-care and balancing their health needs with other commitments.
If you’re caring for a child with lupus, it can sometimes mean spending more time with them than with other people in the family. This can be difficult for both the caregiver and other family members — and especially for children.
If you have other children in your family who don’t have lupus, try to spend one-on-one time with them when you can. It can also help to ask them how they’re feeling, answer their questions about lupus, and try to help them understand how lupus affects their sibling.
Take care of yourself
Keep in mind that it’s important to take good care of yourself, especially when you’re helping to care for someone else. You need and deserve rest and support, too. Make sure that you take time for yourself when you can, make healthy choices, and take steps to manage your stress.
For example, you can:
- Take breaks from caregiving to do things you enjoy
- Spend time with friends and loved ones
- Stay active
- Get enough sleep
- Avoid tobacco and limit alcohol
- Eat plenty of fruits, vegetables, whole grains, and low-fat or no-fat dairy
Learn more about how you can manage stress.
You can get support from:
- Family and friends
- Lupus support groups and caregiver support organizations
- Community or faith organizations
- A counselor or therapist
And keep in mind that there are steps your loved one can take to live well with lupus.