One Patient's Positive Perspectives

Work responsibilities invisibly pull...

This girl with lupus is very blessed and grateful!  I thank God daily that I still have a job and a career, lupus nothwithstanding.  This unfortunately is not the norm for most lupus patients with significant symptoms.  My amazing career blessing?  20 years managing a local government law office.  Tough work for anybody, but with God’s daily help and grace, and the support of two amazing men, it has been a victorious and humbling adventure.

Work responsibilities invisibly pull at me each morning, drawing me out of bed to clear away the lupus cobwebs in joints and brain cells.  It is pretty slow going at first, and some days we just don’t make it, but each morning is a worthy fight!  Sound the battle cry, blast the trumpet, sing the fight song, and charge against the unfair unkind unseen enemy, Lupus!  Determined to press on, keep fighting and prevail in the end!  I will be (an almost) daily victor!

Venturing out onto the freeway...

Venturing out onto the Arizona freeways toward my office, arriving sometime after mid-morning each day, the busy responsibilities of my position as legal administrator in the attorney’s office await.  Staying a little longer than the rest, making the most of  my best hours of mental clarity.  There, two outstanding senior attorneys (and a host of other co-workers) honor the spirit of the ADA, encouraging and embracing creative accomodations of my ever-changing lupus battles.  These two men are the amazing ones!

When we didn’t know it was lupus, they were supportive.

When we found out the reasons for my pain, they were relieved with me to finally have a diagnosis.

When new prescriptions brought pain relief, we celebrated together.

When my life was threatened and long absences followed major health implosions, they were extremely patient and kind.

When sick leave was gone and my paychecks were in peril, they marshaled resources and donations of leave from co-workers.

When lupus eroded my analytical thinking, they were willing to stand beside me and fill the gap in my faltering abilities until each recurring lupus storm passed.

When CNS lupus caused sudden inability to enunciate clearly, or caused my memory to blank out, they stepped in to speak for me or lead a meeting on my behalf without missing a beat.

When budget number crunching skills glitched from lupus CNS overload, they helped!

When I needed to scale-down responsibilities and focus on big overwhelming projects, analytical thinking or management problem solving, they provided me with resources and support to free me to accomplish the impossible.

When others couldn’t understand the lupus they couldn’t see, they educated and advocated on my behalf.

When my personal power faltered, there they were, ever willing to coach and mentor me through the complexities of supervision and people management.

When our employees went to 4-10 schedules, they let me continue working 5-8s, telecommuting from home on the 5th.

When lupus inevitably took away and eroded some of my highest abilities that didn’t come back 100%, they continued to believe in, respect and accept the slightly lesser “me.”

Virtues "in between the lines" of the ADA

Every person with lupus, or any other autoimmune disease, deserves to have a work experience and relationships like this.  But, they don’t.  Employers that follow the spirit intended by the Americans with Disabilities Act, have “something more” that was never penned into it, making it truly happen.

The real true spirit of the ADA, is “between the lines” in the kindness and goodness that must be demonstrated to make it work.  With these human virtues present, the right accommodations can happen. 

In the absence of these virtues “between the lines” the intent of the ADA is unrealized, and workable solutions acceptable to employer and employee are very hard to reach.  In the absence of kindness, sick employees may become defeated and discouraged.   What a difference!

Persistent support helped...

Was it always easy for these two men to deal with the negative effects of lupus on my professional performance?  No, lupus has put some critical pressure on them in their determination to support and accomodate.

Their persistent support helped me be open and honest about my limitations.  Often humbled by the unwelcome challenges lupus brought into my career path, my faith was stretched to strive to do the best I could within my new limits.  Their creative accommodation and encouragement allowed me to continue to fight and win my battles against lupus, find new ways to deal with changed abilities, and to keep on working productively.


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