Lupus is a pretty unpredicatble disease, you don't know from day to day and sometimes from hour to hour how it may affect you. You can jump out of bed filled with energy and end your day in the hospital. This makes working a standard job quite challenging for many. There is a statistic online (because everything online is true) that only 31% of lupus sufferers work a full time job.
Based on how often symptoms present themselves, this is s statistic that is quite believable. Even in the best of circumstances you are getting bloodwork every 3 months, eye exams every 6 to 12 months. If you have a few flares in between that means a lot of time off of work. While employers may want to be sympathetic, after a while it wears them down and when you couple that with the fact that not many people understand this disease, they look at you and decide that since you don't look sick, you are more than likely playing possom and stealing days off work.
Recently, an insurance company actually sent a letter to one of its insured saying they'd "self diagnosed" because whenever the adjuster would speak with the patient, she expressed having pain and her voice was hoarse, even with documentation from the doctor the adjuster still made his own assessment so if getting insurance companies to believe you with documents to back up your issues, imagine what it's like to get your boss to believe you when you don't share your medical records with him.
Holding down a full time job them becomes another stressor which can lead you right back to the ER. Stress is a lupus trigger. Worry that you will be fired, how will you cover your bills and other concerns that come with the potential for losing a job makes many sufferers wait until things are especially bad before seeking medical attention. Not because they fear their care will be bad but they fear their employer may be fed up.
There are some solutions to this issue of not being able to work a traditional job. Did you know that there are a lot of companies that will actually pay you to work from home? They also ask you your availability. This allows you to work around your doctors appointments without penalty. Do you have the patience to teach online? Many don't realize that some pretty big companies with household names hire people who work from home.
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