Having a Social Life When Managing Lupus

Living with lupus can certainly change one’s perspective on life and the many activities that can fill it up. Often in the rush of every day living, a person hardly has time to breathe, much less to rest and recharge. But what if one doesn’t have much of a choice?

One patient’s story

The pain and fatigue that accompany this condition can be debilitating to the point of robbing a person from a social life. So, according to Kelly McRae’s article about her journey with lupus, it’s a matter of figuring out one’s new normal and the best way to cope.

Just like anyone else, McRae maintained a busy a schedule. Plus, she is a self-professed extrovert who enjoys socializing. However, she has had to learn to adapt while still maintaining a positive attitude.

While she doesn’t downplay the pain and fatigue, she has learned to find comfort in her “alone time.” Although she has not completely turned away from having a social life, she has learned to place more value on the simple things.

For example, McRae mentions a period of having a higher energy level, though not quite the same caliber as before the onset of lupus, but nonetheless, enough of a respite from the pain and fatigue to attend social events and visit more with friends. Ironically, she did not find this phase quite as satisfying as she would have previously thought. Her reason? Since receiving the diagnosis of lupus, she has learned to focus her much needed energy in a different direction. Rather than trying to commit and follow through on as many activities and gatherings at a 24-hour time-span could possibly hold, she carefully chooses what fills up her day and channels that valuable energy on what matters to her the most.

As she states, lupus “has taken [her] to a different place” where she has found an appreciation for things that she had taken for granted before developing this condition, like “appreciating the beauty of a flower and reading a book.” She calls this journey one of “self-discovery” and feels okay with “accepting fewer social invitations.”

Making the best of circumstances

Many individuals who deal with the effects of lupus might have similar stories of adapting to a life that’s impacted by flares and persistent fatigue, but it doesn’t end with the person simply becoming a recluse. Rather, learning more about how the disease works and what to expect can greatly empower a person and help them maintain control over some aspects of his or her life. According to Charles Merrill, PsyD who practices in New York City, a lupus patient can take a good look at different areas of his or her life and ask if it’s something that can be controlled.

Once a conclusion is drawn, then that person can better determine how much or how little interaction is best and what types of activities would be ideal, even on a good day.