Lupus can have a profound effect on one’s mood and outlook on life. Whether triggered by the physical symptoms of the condition itself, or as a result of side effects of medications commonly administered to lupus patients, the effects of lupus can have a marked psychological impact on those who live with it.
Lupus is a very complicated illness, and the various forms of the disease can affect people in different ways. Occasionally, this unpredictability leads to confusion, distrust, and stress.
Lupus is caused by an overactive immune system. Treatment is aimed at resetting the thermostat of the immune system so it’s not overreacting without causing major side effects; in short, the goal is to try to return the immune system to being normal. Occasionally, however, there will be unpredictable effects of a medication.
This presentation aims to explain the differences between the psychological effects of the condition and the medications used to treat it.
Lupus presents in so many different ways that it is known as “the great imitator.” The broad range of symptoms can confuse both patients and their primary physicians, and so an initial diagnosis is often very difficult to make.
Further, even when the diagnosis is made, it isn’t possible to precisely anticipate the course of the illness. Delays in diagnosis and the unpredictability of symptoms tend to frustrate patients and can reduce their confidence in their medical teams.
An additional frustration relates to the fact that many of the symptoms of lupus are the sorts of aches, pains, and fatigue that are common among people who don’t have lupus. People with lupus are, therefore, faced with further uncertainty: Is their symptom related to lupus, or can it be chalked up to aging or a completely unconnected ailment?
This uncertainty can lead people with lupus to worry that every symptom is a sign of SLE and to have problems believing their medical team when they say not to be concerned. Such uncertainty can also lead to vague, chronic worry about health and can interfere with the ability to make plans for the future.
Is lupus caused by stress? The short answer is “no.”
While stress may appear to set off lupus flares, there hasn’t yet been evidence to indicate that stress, in itself, is enough to cause lupus or a lupus flare.
This clinical evidence is important in that some people might blame themselves for their lupus, believing that their stress might have caused the lupus. Such a rationalization is very human and understandable, but the reality is that our understanding of the cause of lupus is incomplete but that it does appear that lupus is not caused by psychological factors.
There is some biological evidence of links between stress and lupus flares. Such research focuses on B and T suppressor cells, cytokines, and various types of antibodies. It should be noted, however, that these research findings are interesting but have not yet been shown to have clinical, practical relevance.
While stress does not seem to be a primary cause for lupus, it is clear that lupus causes people stress through its physical effects, its related uncertainty, and the resulting worries about physical problems.
Lupus can directly affect thinking, mood, and personality. When it has these effects, it is called neuropsychiatric lupus. Symptoms of neuropsychiatric lupus include:
Steroids are often central to the treatment of lupus, but steroids such as prednisone can cause all of the symptoms of neuropsychiatric lupus. Because neuropsychiatric symptoms are common in SLE, terms have sprung up that are widely used but are also often inaccurate.
“Steroid psychosis” is a term that some use for the emotional effects of steroids. It should be emphasized, however, that steroids don’t commonly cause psychosis, but more often cause milder emotional changes, such as anxiety or depression. The term “lupus cerebritis” is used to specifically refer to the effects of lupus itself on the brain.
In trying to distinguish the cause of neuropsychiatric symptoms, it is useful to recall that lupus is more likely to be the cause than steroids when:
Those with lupus may wonder how their condition can directly and biologically cause problems with thinking and mood.
Often, there is a direct neurological involvement in lupus related to the autoimmune system. There remains controversy about how lupus affects the brain. Antineuronal antibodies (antibodies against nerve tissue) have been demonstrated, but it is not yet clear whether it these antibodies cause direct damage to the nerves. We know that patients with lupus, on no steroids, can have depression, delirium, confusion, mistrust, and even psychosis.
Anti-phospholipid antibodies are also present in some patients with lupus. Anti-phospholipid antibodies don’t seem to cause inflammation, but rather are involved with increased clotting risk, and can be associated with stroke and cognitive problems.
Many of these neuropsychiatric effects are reversible, and there is a much lower risk of developing these problems if a patient with lupus only has joint and skin involvement, if the patient is ANA-negative or if the illness is a the result of a medication, which can be withdrawn.
People react to having lupus in different ways, and these reactions can change with time. Some of these reactions may include:
It is important to note, however, that along with these “negative” reactions, those in the lupus community have rallied around each other to promote the positive effects of taking part in their shared experience. Feelings of pride, endurance, connection, appreciation, and maturity have also been commonly seen in people with lupus.
After opening the topic up for discussion in the workshop, it became immediately clear that everyone in the room had a different way to cope with - and improve - their own relationship with lupus.
Advice from workshop members ranged from treating yourself (to additional sleep, to your favorite food item, to a vacation, or a book, or a movie, or TV, or a visit to a favorite place) to communicating with those who understand, or at least can empathize with – your struggle.
While it’s important to try to focus on the positive, it’s equally important to accept that certain days will be difficult and that merely trying to remain positive may not be enough. As one member put it, “you can live with it for years and years, and some times are better than others.”
“Be honest with yourself,” added another member. “Sometimes, it’s too much to ask to put on a front.”
“Sometimes I find myself spinning my own wheels, staying angry,” another member explained, “spending too much time on the Internet overdiagnosing myself, driving myself crazy. I had to tell myself not to obsess on the computer. Sit back. Get a different perspective.”
One way to get a new perspective is to reach out for help and accept that it’s okay to do so. Talk to those going through what you’re going through. Isolation can set in, and it’s important to realize that you’re not alone.
A major benefit of talking with others who share your experiences is to understand which tools they use in their “toolbox.” Each person has his or her own way of making their situation better, whether it’s a technique such as muscle relaxation, yoga, TV watching, or reading. You may have your own tools, but you may find that the tools other people are using can help you as well.
Learn more about the HSS SLE Workshop, a free support and education group held monthly for people with lupus and their families and friends.
Summary by Mike Elvin