Resources and Tips for Patients with Lupus
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.