Living With Lupus From Diagnosis Forward

Whether you were recently diagnosed or have been living with lupus for some time, what do you need to know about your day-to-day life? Let's talk about your diagnosis, the initial strategies, your lupus care and regular medical care, as well as how to learn more about your disease and find support.

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Living With Lupus

Those who have been newly diagnosed with lupus (systemic lupus erythematosus) may find themselves shocked at first, possibly relieved if they had envisioned something terrible, and finally, confused. Not only is the diagnosis challenging—with many people initially misdiagnosed—but the treatments vary significantly from one person to the next. Lupus has been coined a "snowflake," describing how no two people with the condition are exactly alike. Where do you begin and what are the next steps you should take if you've been diagnosed with lupus?

Newly Diagnosed

“I have what?” is the initial reaction of many people diagnosed with lupus. And because the general population knows little of the disease, this is no surprise. Most people only know they’ve been suffering from vague, painful signs and symptoms of lupus that come and go, with no set pattern of predictability. Strangely enough, most lupus flares are triggered by something (though the causes vary) and sometimes follow a pattern. Understanding what triggers flares, and possibly being able to lessen or prevent them from occurring, is a major key to living with this illness and maintaining a high quality of life.

Finding a Healthcare Provider

Once you have a diagnosis, or even if you are still being evaluated, it's important to find a healthcare provider who cares for people with lupus—usually a rheumatologist. Since lupus is relatively uncommon, many practitioners have seen only a few people—or may never have seen—someone with lupus. Just as you would choose a house painter who had painted dozens of houses over a first-time painter, finding a healthcare provider who is passionate about treating people with lupus is important.

If you are at this point in your journey, we have a few more tips on finding a rheumatologist to care for you. Choose wisely. You want a healthcare provider who will not only be with you through the inevitable frustrations of the disease but one who can help coordinate your care with the other specialists and therapists you will see.

Initial Strategies After Your Diagnosis

It may be difficult at first to realize you’re dealing with a chronic illness—one that has no absolute causes or cures. As with other chronic diseases, however, just being diagnosed can be a great relief. At least you can give a name to your symptoms and do something about them.

Your healthcare provider will talk to you about the treatment options available. It's helpful to understand that "treatment" is an ongoing process. Learning about all of the treatments available can seem overwhelming, but you don't have to learn everything at once. Early on you may only wish to learn about any treatments you need right away and any symptoms that should prompt you to call your healthcare provider.

Adopt Wellness Strategies

You may feel that all you want to focus on is your initial treatment, but when you are first diagnosed (or, for that matter, anytime) it is a good time to begin developing strategies for wellness. In some ways, getting a diagnosis of a chronic condition is a "teachable moment," and many people find themselves more conscientious about wellness than they had previously been.

Wellness strategies include stress management (through meditation, prayer, relaxation therapy, or whatever works for you), an exercise program, and eating a healthy variety of foods as a good start. It's important to continue to enjoy your usual activities as much as you are able.

Some foods appear to improve or worsen lupus symptoms, though studies looking at this are in their infancy. Since everyone with lupus is different, the best foods for you, even when studied, could be very different. If you believe your diet may have an effect on your disease, the best approach is probably to keep a food diary (like those kept by people trying to figure out if they are allergic to a specific food).

Finding Support

Fostering friendships is critical in building a support base that will help you cope with the disease. In addition to staying close to long-time friends, finding others with lupus is a definite plus. Those who have good social support are less vulnerable and may ultimately have less psychological distress and less "disease burden" related to lupus than those with less support.

We can't say enough about finding people who are coping with the same challenges. You may have a support group in your community, but you don't even need to leave your home. There are several active lupus support communities online that would readily welcome you in. Find other ways to build your social network as well, whether that is through supporting a common cause, a church group, or other community groups.

Regular Care

You will need to see your rheumatologist regularly and not just when you have symptoms that are worsening. In fact, these visits when things are going well are a good time to learn more about your condition and talk about the latest research. Your healthcare provider can help you recognize the warning signs of a flare based on any patterns they see with your disease. These may be different for everyone; however, many people with lupus experience increased fatigue, dizziness, headaches, pain, rashes, stiffness, abdominal pain, or fever just before a flare. Your healthcare provider may also be able to help you predict flares based on regular blood work and examinations.

In addition to regular medical care, many people are finding that an integrative approach works very well. There are several alternatives and complementary treatments for lupus that can help with concerns ranging from managing pain to depression, swelling and stress.

Preventive Medicine

It's easy to push preventive care to the back burner when you are diagnosed with a chronic disease such as lupus. This is not only unwise in general, but given that lupus impacts your immune system, regular preventive care is even more important. And, as with any chronic inflammatory disease, having lupus increases your risk of atherosclerosis and coronary artery disease.

Care such as regular gynecological exams, mammograms, and immunizations should be included in your treatment plan.

Learning About Your Lupus

As we mentioned earlier, learning about your lupus is very important. Not only does learning about your disease empower you as a patient and reduce your anxiety, but it can make a difference in the course of your disease. From recognizing the early warning signs of a flare to prompt medical attention for the complications, becoming educated about your disease is a must.

Being Your Own Advocate

Studies tell us that those who take an active role in their care with lupus have less pain and fewer illnesses requiring medical intervention, and they remain more active.

In the workplace and at school, being your own advocate is just as important as at home or the clinic. Since lupus can be an "invisible" or "silent" disease, it's been found that sometimes people with lupus suffer needlessly. Accommodations, whether at the workplace or on your college campus, can make a significant difference, and many options exist. Yet since the disease is not visible like some other conditions, you may need to initiate the process and seek out help yourself.

Bottom Line on Coping With Lupus Day to Day

Coping with lupus isn't easy. Compared with some other conditions, there is less awareness, and many people talk about hearing or receiving hurtful comments about lupus from others. Despite these challenges, however, most people with lupus can live happy and fulfilling lives. Being your own advocate, building your social support system, learning about your disease, and finding a healthcare provider who can be a team with you in managing your disease can all help that happen.

2 Sources
Verywell Health uses only high-quality sources, including peer-reviewed studies, to support the facts within our articles. Read our editorial process to learn more about how we fact-check and keep our content accurate, reliable, and trustworthy.
  1. Lupus Foundation of America. How Lupus Affects the Heart and Circulation.

  2. Meenakshi, B, Sethi, C, et al. Drivers of Satisfaction With Care for Patients With Lupus. ACR Open Rheumatology. 06 November 2019, doi:10.1002/acr2.11085

Additional Reading

By Jeri Jewett-Tennant, MPH
Jeri Jewett-Tennant, MPH, is a medical writer and program development manager at the Center for Reducing Health Disparities.