Patient's Guide

Coping With SLE

But awareness by itself isn't the complete solution. You will want to use that awareness to plan and to act in ways that limit or avoid the burdens, discomforts, and difficulties that lupus can cause, so that the illness does not stop you from doing the things you enjoy in life. There are also a number of lifestyle adjustments you can make to help keep the physical symptoms of lupus under control.

How May Lupus Affect My Life?
Having lupus can make the demands of everyday life challenging. When lupus is active, symptoms of joint stiffness, pain, extreme fatigue, confusion, or depression can make even simple tasks difficult, and sometimes impossible. And because you may not have any visible signs of disease, the people around you may not realize how much discomfort and pain you are experiencing, or they may not know that you are sick at all.

You should not ignore the limitations that come with this disease. But there are steps you can take to stay active with work, relationships, and events that enrich your life. These actions and strategies can lighten the burden of your illness and allow you to lead a life of accomplishment and achievement.

Explaining Lupus to Others
Explaining lupus is a challenge. It is not easy to describe a disease with symptoms that are so varied and yet often not visible, whose effects can range from manageable to life-threatening, and whose course is sporadic, alternating between periods of wellness and flare. Explaining lupus is made even more difficult because the causes of lupus are unknown.

Lupus in the Family
Family life will inevitably change when a family member receives a diagnosis of lupus. This section looks at how you view yourself, your family, husband and even children and how they view this new journey that they will be taking with you. Open communication within the family about your lupus may help to allay fears and help to foster an understanding and supportive environment for all family affected by the disease.

Pregnancy and Lupus
Planning a pregnancy and being pregnant are two other areas of family life that demand special considerations.

Lupus Among Friends
Lupus can restrict friendships. Do they really understand what I am going through? Do not be afraid to talking with some of the people who are closest to you about your lupus and the challenges it presents. Provide them with information so that they better understand this disease called lupus. The better they understand lupus, the less fearful they will be and the more likely that you will have a relationship of trust and cooperation.

Lupus on the Job
The type of work schedule someone with lupus can accommodate is variable. Many people with lupus are able to work a full-time job, others find they have to cut back to part-time.

Rehabilitation Professionals
If lupus interferes with your ability to function physically, mentally, at home, or on the job. You may find it useful to seek professional help.

Traveling
We all love to travel and your lupus should not stop you from visiting family members or seeing the wonders of the world..

Lupus and You
Let's talk about how you feel about you. It is important to understand the significant difference between viewing yourself as a person with a chronic illness and viewing yourself as a chronically ill person.

Taking Personal Time
Of the many lessons every person with lupus learns, none is more valuable than learning to take personal time. Walking in the park, listening to a baseball game on the radio, planting a flower garden, crocheting a scarf, re-visiting a favorite book or movie, practicing yoga or Tai Chi, meditating, praying, or some other form of spiritual practice -- self-enrichment activities like these will nourish and invigorate your spirit. Taking personal time will help provide you with the strength and the relaxation you need to have a better life while living with lupus.