• For Patients and Families

    How do I tell my friends and family about lupus?

    Dealing with a life-long illness such as lupus can be hard. Your friends, family, classmates, teachers, bosses or coworkers may not understand how lupus affects you and what you can do. Members of the Lupus Center health care team at Cincinnati Children's Hospital Medical Center can help you understand the disease and explain it to your family and friends.

    You can tell them lupus is a chronic disease that changes over time, but it is not contagious. Let them know that lupus and the medications used to treat it can sometimes change your physical appearance, your energy levels, your ability to do certain tasks and your mood.

    Talking openly and honestly can help your friends and family understand these changes when they occur. Tell them as much as you think they need to know, when they need to know it. If they want more information, you can refer them to the Lupus Center.

    Remember, it is possible to have lupus and have an active, rewarding life. It is important you take control of your illness and not allow it to take control of you. Having a positive attitude will make it easier for your family and friends to relate to you as they did before you were diagnosed with lupus.

    Self-Management Tips for People With Lupus

    Studies show that people with lupus who are well-informed about the disease and participate actively in their own care experience less pain, require fewer doctor visits, build self-confidence and stay more active. The National Institute of Arthritis and Musculoskeletal and Skin Diseases, a unit of the National Institutes of Health, refers to these studies in urging patients to develop a plan for maintaining wellness. The concept of wellness involves paying close attention to body, mind and spirit.

  • One of the primary goals of wellness for people with lupus is coping with the stress of having a chronic illness. There are many different ways of managing stress, including exercise and relaxation techniques such as meditation and yoga. Find the one that works best for you. If you feel depressed, talk to a member of the Lupus Center health care team about counseling or possibly medication.

    Self-management does not mean doing everything yourself. Developing and maintaining a good support system is also important. This support system could include family, friends and members of the Lupus Center health care team. Support groups can provide emotional help and boost self-esteem and morale. Group members can learn from each other how to handle stress. Other types of groups -- such as school, religious or community groups -- can help keep you active and involved with other people and projects.

    It is very important for people with lupus to follow up with their health care team even when symptoms are quiet and all seems well. Results from follow-up exams and lab tests on a regular basis allow members of the Lupus Center health care team to note any new symptoms or other changes and to identify and treat flares. Timely visits with your health care team can also allow you to keep up to date with flu or other vaccinations. These vaccinations may be strongly recommended because people with lupus can be more susceptible to infection.