“SLE negatively affects the daily lives, productivity and career choices of those it affects.”
Because the individual’s family and friends don’t have the illness, it often becomes difficult for those closest to them to understand what one is experiencing. It begins to take a toll on everyone involved.
When one has Lupus the families of these individuals are affected as well. Friendships either become stronger or grow weaker. The illness can drastically alter one’s appearance, making the individual not as physically confident- leading to social isolation of oneself.
Resting will become the method of choice when one is feeling too weak to participate in regular social activities, leading to a ton of cancellations and rain checks. Because of this, and the inability to care for one’s house or family the way one or they are used to, feelings of depression and guilt often emerge.
Symptoms such as fatigue and pain can limit the level of activity one is now able to sustain. The easy tasks one was able to complete once before are now what seems like impossible tasks. Lupus seems to affect the ability one has to enjoy or participate in free-time activities of any kind. And remembering to take meds on time when one’s mind is out of order due to lupus brain fog, doesn’t make things any easier, to say the least.
“The average annual direct and indirect costs incurred by a person with lupus can exceed $21,000.”
Lupus is not only a physical burden, but an economical burden to the individual it affects and their caregivers as well. It reduces an individual’s ability to work, which often results in high rates of work disability, reductions in work hours, and/or changes in the nature of an individual’s work. The illness can affect the careers of these individuals and often forces them to change careers within a year of being diagnosed.
*People with SLE, their caregivers and their physicians overwhelmingly agree that career disruptions caused by the challenges of living with lupus often exact a heavy financial and emotional toll, according to the survey (from a survey conducted by the Lupus Foundation of America).
The majority of the individuals, their supporters and their doctors will willingly admit that lupus changes career plans. 63 percent (more than half) of people with lupus quit working or have to retire earlier than planned. 67 percent (about two-thirds) of people with lupus has had to reduce the number of hours worked, and 51 percent of these people settle for less strenuous jobs.
Enjoyment of Life
When one has lupus, one quickly learns that life will never be the same. One becomes consumed by constant lupus fatigue, aches and pains, cognitive dysfunction, and sleep disturbances, that it drives one mad- seemingly depressed.
It’s a lot to take in.
Having fun in the sun becomes a long lost memory due to photosensitivity. Rest becomes a need versus a want when one is sleep deprived. That darn disrupted sleep pattern!
And exercising, forget it! How can one exercise when one feels weak and fragile? How can one exercise regularly if every joint and muscle in the body is causing them severe pain?
The answer is… You CAN’T!