Lupus is an autoimmune illness that causes the body to turn on itself and view various systems of the body as foreign. There are several types of lupus, such as types that affect the skin most, but the most common type can have impact on a variety of the body’s systems. It may cause problems with joints, skin, and most organs, and infection can fairly frequently occur. Getting lupus support usually means getting emotional and medical support.
Having lupus may change things dramatically for many people, and they may seek other people who are experiencing the illness too. One way of being supported would be to have therapist with whom a person can meet privately. In mid-size or larger communities there may be a few therapists that specialize in working with people under stress and/or with illness. Finding one of these therapists may prove helpful.
A lot of times people benefit from being in some form of support group, and there are many that offer lupus support. A few people have one of these groups in their community but not everyone does. If no local group is available there are a couple of options. First, people could consider talking to others about starting one, but this may be challenging particularly if lupus is causing fatigue, which is a very common symptom. Another option is to take advantage of online support groups.
There may be several online lupus support groups available and people should perhaps join a few, see which ones are the most active, and determine if reading contributions from others is helpful. Many of these groups are messages boards, which can mean people shouldn’t get discouraged if there is no immediate response to posting. It can take a while for group members to read new posts.
Some doctors may advise against email or Internet groups. The typical reason they do is because people may give medical advice to each other. While new medical information may be interesting, patients are advised to treat it with due caution, because it comes from medical lay people, may be inaccurate, or might be totally inappropriate to care.
Another place that people can get lupus support is through the medical community. In particular, many people chose specialists to see when they have this condition, and might work with endocrinologists, rheumatologists, or neurologists. Having one of these doctors or even a general physician as the “point-man” who helps coordinate care and relay information between all other doctors is very valuable. Lupus can mean seeing doctors frequently when the condition flares up, so looking for and choosing a supportive helpful doctor can be very valuable to treatment.
Lastly, though this may not be possible for everyone, those who have a network of family or friends who can provide a little support should use it. It may not be needed that often, but sometimes fatigue, pain or an infection could be so overwhelming, someone else going to the grocery store or picking up kids from school would be of immense help. Most people who love a person with an illness feel powerless because they cannot take that illness away. Giving these people a concrete way to help now and again may be extraordinary lupus support, and actually mentally relieving to those who want to help but don’t know how.
