Personal and family life will inevitably change when a member is diagnosed with lupus. Those in a family confronting lupus are challenged to redistribute chores, share responsibilities and be flexible.
Whether personally or among family and friends, the following struggles may be present:
Emotional Challenges: A person with lupus may feel guilty about not being able to do the things they once did. They may be unhappy about the accommodations family members have to make on their behalf. Siblings may feel jealous of all the attention that person is receiving. If one’s significant other has lupus, the intimacy once shared between the two may be impacted.
Social Isolation: People suffering from lupus may think that no one understands what they are going through or it is just too hard to explain. Also, they may feel too weak to participate in social activities. Finally, some may not be as physically confident in their appearance and therefore choose to withdraw from social situations.
Good communication is crucial to making sure that home life remains as normal as possible after someone is diagnosed with lupus. Sharing information about the illness, including its symptoms, prognosis, and treatment can mitigate concerns. It is also important that family members know the extent of any pain or fatigue, so they can provide additional assistance.
A sensible schedule is another good idea. Trying to do it all only increases stress and exhaustion that could trigger a flare. When itemizing, make time for the things that really matter, and say “no” to the things that are not as important. Leave the rest of the list for another day.
Parents with Lupus
A parent with lupus may experience additional challenges to their responsibilities. Most likely, the more rested and less stressed one is, the more quality time he or she will be able to devote to her or his child(ren). It is pragmatic to reassign chores and/or ask others to take charge of some parental responsibilities. These kinds of adjustments can help minimize disruptions in the child’s day to day schedule.
Children are quite sensitive to a parent’s mood changes. Often they do not know how to verbalize their feelings of concern. Children may also focus on how a parent’s lupus illness directly affects them. Sharing information with children about lupus will benefit everyone involved.
Children with Lupus
When a child develops lupus, parents encounter difficult challenges. Parents will need to consider the child’s mental and psychological well-being as well as any short and long-term physical health issues. Certain activities may be less available to children with lupus, even simply playing outdoors. It is important to be aware of the issues the child faces in order to create strategies and solutions. Above all, children should be encouraged to strive to achieve their goals. Even if some of these ambitions need to be accommodated, later on, let them know that lupus does not have to control all aspects of their lives.
This post concludes the lupus blog series. To learn more about lupus, please read our previous blogs: