Resources for Parents of Kids With Lupus

It can be life-changing when your child is diagnosed with a chronic illness. Caring for children with chronic illnesses, even as they grow to be adults, can be difficult and stressful at times. It often means that your lifestyle looks different than you expected it to. Pulling your family together as a team is important, ensuring everyone feels heard and involved.¹

As a parent, you also have the privilege of supporting your child emotionally, giving them the tools to cope with their "new normal." Lupus can be a particularly difficult illness, as it is unpredictable and can affect different body parts.^1,2

Know that you are not alone in your journey. This article contains tips and resources to help you manage your child’s lupus while caring for yourself and your family.

Be informed and get involved

A diagnosis of lupus can feel scary and overwhelming for both you and your child. Getting involved in your child’s care can go a long way to making it feel manageable:¹

Learn more about lupus. Explain what you learn to your child in a way that is easy to understand and at their level. This will help them understand what is going on in their body and may help them communicate their symptoms.

Encourage your child to ask their doctor questions. Being involved in their healthcare can help them feel a bit more in control.

It is likely your child will see multiple doctors. Long drives and missing multiple days of school can take a toll on you and your child. Speak to your doctors about grouping appointments on the same day.

Help your child express their emotions

When someone is coping with a chronic illness, it can affect the whole family. You, your child, and even your other children may be feeling big emotions that are difficult to manage:^1,3

Take some time for yourself to process what you are feeling. It may help to talk to friends or family. Some parents prefer to speak to a professional counselor or therapist who is trained in helping families cope with illness.

Communicate openly with your child. Not talking about feelings can make the anger, sadness, or fear even bigger. Let them know that you are always around to listen. Help them know that it is okay to be mad or scared.

Talk to your other children about how they may be feeling. They might be scared that their sibling will die. They may be afraid that lupus is contagious. They also may feel like an unfair amount of attention goes to their sibling.

Seek out support

It is important to have people to lean on through this journey. You cannot pour from an empty cup. Also, reaching out to others can help you access resources you may not have otherwise been able to:¹

Reach out to your team of doctors. They can connect you to support groups, prescription plans, and other services for your child.

Talk to your child’s school. Explain what your child’s experience with lupus is like to their teachers so that the teachers can make accommodations if necessary. Also, speak to the school nurse so that they are aware of what your child may need.

Communicate with friends and family for emotional support. Also, talk to them about your needs. They may be able to watch your children while you take some time away or plan fun activities. They also may be able to help by dropping off dinner or just calling to check in.

Teen tips

The teenage years can be hard for anyone, especially if your child is a teen with lupus. As they grow older and look for independence, teens may feel frustrated and upset about limitations from lupus:^4,5

Encourage them to talk about their lupus experiences and any feelings it brings up. If they do not feel comfortable talking to you, encourage them to talk to the following:

• Friends
• Other teens with lupus
• A mentor at school
• A licensed counselor

Ask your doctor about the signs of depression. Your child may need extra support if they are showing signs like:

• Loss of interest in things they care about
• Low motivation
• Changes in sleep or eating

Encourage them to be involved in their care. Help them practice making healthcare decisions now and help them to be independent. This will help build their confidence and self-esteem.

Be patient. Your teen may need time to adjust to all the changes happening in their life. This may come out as frustration or anger toward you. Set clear boundaries but understand they may need some nurturing.