Sections coming soon.
Lupus can be so mild that it may go undiagnosed or have little effect on health. However, it may be moderately severe and require ongoing treatment and monitoring to keep your immune system in balance. Or you may experience more severe lupus flares, be treated with strong medicines, and need hospitalization. Or you can experience all of the above, because lupus can change over time and no two cases of lupus are alike.
Even if you have had lupus for years, you may not know anyone else with the same illness. Lupus is not a common disease. Lupus is very unpredictable, which can make it difficult to plan anything. Symptoms may sometimes prevent you from working, or even taking care of your family. You may be forced to change careers, which may impact your lifestyle. Your sense of who you are may change. Your self-esteem may plummet.
Even after you have been diagnosed with lupus and you have gone into remission for some time, symptoms like muscle weakness, overwhelming fatigue, joint pains, or difficulty focusing may come back. But these are not symptoms that others can see. Your symptoms may come and go without warning. Even those closest to you may doubt your illness is real, even though it is.
Lupus can be very lonely. But lupus can also bring with it certain opportunities to learn. You may discover strengths you never knew you possessed. You may see the world very differently and find that the things that had been important to you in the past have changed. You may see priorities very differently and appreciate the simpler pleasures in life and having the people most important to you nearby.
In this section you will learn about:
- The difficulty and time it takes to get a diagnosis of lupus
- Explaining lupus to others in your life
- Finding the right doctor to treat your lupus
- How to manage your disease
- Coping with the changes that lupus may bring to your life and those close to you
- Feelings of sadness, guilt, loneliness, anger, anxiety, depression, and loss that can occur as part of adapting to living with a chronic illness
- Managing the uncertainty and unpredictability that accompanies lupus
You will be asked to choose a “stage and age” that matches your own. If you are newly diagnosed, there will be information designed just for you. If you have lived with lupus for a longer period of time, you will find other relevant information, including:
- How to cope with physical changes and limits
- How to cope emotionally
- What to tell others about your illness
- Communicating your needs at work, school, or in social situations
- How your illness may affect those close to you
- When coping styles clash
- Ways to create support among family, friends, and neighbors, or at work
- Ways to find the support group that is right for you
- What professional support may be helpful and how and where to find it
- Specific health issues related to your “age and stage” of life, and what role lupus might play
- How to develop good communication and a partnership with your doctors
- Why coordinating your healthcare can be so important
We hope you will find others on this website who inspire you, and information that will help you adjust to the changes that lupus brings to your life so you can move forward and discover new sources of fulfillment and a greater appreciation of who you are.