Lupus in the Family
Family life will inevitably change when a family member receives a diagnosis of lupus. Chores need to be redistributed, responsibilities shared, and everyone in the family must try to remain flexible.
There will be emotional considerations as well. As the person with lupus, you may feel guilty about not being able to do the things you once did. You may feel unhappy about the accommodations others in your family have to make on your behalf. Your brothers and sisters may feel jealous of all the attention you are receiving. If your husband or wife, or significant other has lupus, you may feel discouraged because lupus has affected the intimacy you once shared. If your father or mother or other family member has lupus, you may be afraid that he or she will die.
Good communication will be crucial in making sure that home life remains as normal as possible after you are diagnosed with lupus. Sharing information about the illness, including its symptoms, its treatment, and its prognosis, can lessen everyone’s fears and concerns. The most important thing you can do is let family members know the extent of your pain and fatigue. This will help them know when they need to chip in.
A sensible schedule is another good idea. It’s understandable that, after being forced to cancel or postpone favorite activities due to lupus, you may then be tempted to tackle the entire "to-do" list in one day. However, trying to do it all only increases stress and exhaustion, and could trigger a flare. The best approach is to learn to make time for the things that really matter, say "no" to the things that are not as important, and leave the rest of the list for tomorrow -- or the next day.
If you have Internet access, you may want to use it as a quick and easy way to have home delivery of groceries and other supplies when joint pain or extreme exhaustion make driving and shopping too difficult to manage.
A parent with lupus has additional challenges to the already heavy demands of parenting. If you are a parent with lupus, it’s a good idea to maintain a sensible schedule, reassign household chores, and have friends and outside family members you can call on to take over some parental responsibilities. These kinds of adjustments can help minimize disruptions in your children’s schedule and daily activities. And of course, the more rested and less stressed you are, the more quality time you will be able to devote to your children.
Your children will have concerns about your health, especially whether or not you will die from lupus. Children are quite sensitive to a parent’s mood changes, but often do not know how to talk about their feelings of unease or concern. At the same time, they probably cannot help focusing on how your illness directly affects them. It is vital to have good communication within the family. Sharing information with your children about lupus and the changes it brings -- both to your health and to the responsibilities of different family members -- will help everyone.
When a child has lupus, parents will face some different challenges. As a parent you will need to consider the child’s mental and psychological well-being as well as the immediate and long-term physical health issues. Too often children can become identified by their illness -- by others, if not by themselves. Further complicating identity and other developmental issues, certain activities may be less available to children with lupus, even something as simple as playing outdoors in the sunshine. Being aware of the issues your child will face, both in the immediate future and throughout his or her life, will go a long way in preparing strategies and solutions. Above all your child should be encouraged to have and strive for goals and dreams. Even if some of these ambitions have to be changed later on, it is important to let your child know that lupus does not have to control all aspects of his or her life.
Intimacy can be challenging when you have lupus. Lupus and its treatments may cause changes in your physical appearance, and these changes -- skin rashes or lesions, hair loss, weight gain -- may affect your sense of your own desirability. Joint pain, mouth sores, vaginal ulcers, and a decrease in lubrication from the glands can slow sexual responsiveness and make both foreplay and intercourse painful. Pain, fatigue, depression, and certain medications can lower your interest in sex and intimacy. And, if the frequency and pleasure of intimacy and sex fade, the partner without lupus may feel hurt and confused, or even resentful and angry.
But it is possible to regain intimacy and tenderness between partners. Good communication will help counter negative self-perceptions or feelings of rejection, and can keep an amorous spark alive even when sexual activity wanes. Physical adjustments, such as using pillows for support, finding less painful positions, and applying lubricating ointments and creams, can relieve discomfort during sex. Taking a warm shower or bath can help relax sore muscles and joints, and anti-inflammatory medication may also provide relief. Sex aids can help promote a partner’s response to intimacy. Other forms of physical contact -- gentle massage, tender touching, a loving embrace -- can provide intimacy without intercourse. If problems persist, couples should seek the help of a licensed therapist, to help improve communication and offer suggestions.
ALL IN THE FAMILY: Parents struggle to manage demands of lupus and their households
Fall 2005 issue of Lupus Now magazine
Take Good Care: Lupus affects entire families, changing the lives of those with the disease and the people who care for them
Spring 2005 issue of Lupus Now magazine