One Patient's Positive Perspectives

Posts tagged ‘work’

Lupus and Working with ADA and FMLA

Empty Office Chair and Desk
Working with Lupus challenges every patient because it impacts the activities of daily living needed for holding a job or career.  At times, it can be downright difficult to work with lupus, when even getting up in the morning is rough.  Thanks in part to the important protections the Americans with Disabilities Act and the Family Medical Leave Act provide to U.S. citizens, it is not impossible.


Recently, we held a meeting at work for the annual discussion of my ADA accommodations.  To prepare for my employer’s annual recertification process, some work was required before the next quarterly appointment with my rheumatologist.

Forms for requesting an ADA accommodation were downloaded from my employer’s Human Resources web site, along with an FLMA Certification form.  The paperwork included a document for my signature permitting my doctor to share my private medical information with the HR department at work.  Because this was not the first year, the prior year’s accommodation and FMLA forms could be used as samples for preparing this year’s forms.

FMLA ChecklistOnce the forms were ready, next came gathering backup documents to attach to the forms:

WP_20170912_11_27_53_ProI set up a meeting with my supervisors a few days before my doctor appointment, telling them about the need to recertify FMLA and update ADA.  I gave them each a copy of the forms and the attachments we would talk about at the meeting.  This helped prepare them to be ready with anything they might want to suggest for the new year’s accommodation, or have conversations with others about the impacts of my past accommodations.

It is always a great idea for an employee to take charge of initiating any ADA/FMLA process!  It helps prevent putting the employee in a defensive position, and demonstrates the employee’s professional approach to workplace challenges related to their disability.  By taking the lead in coordinating the conversation my bosses, human resources, and my doctor before the recertification deadline, it helped me be better prepared to respond to any changes they might propose.  My bosses and the Human Resources office thanked me for making this aspect of their jobs easier.

Calendar a meetingLater, when we met to talk, my bosses both expressed how well my schedule changes and other accommodations had worked out during the past year, and readily agreed with my suggested accommodations for the next year.  I asked them if there were any problems or concerns but there were none.  The meeting gave us opportunity to talk in more depth about some of my personal and work challenges and struggles due to Lupus.  It seems this helped them better understand my commitment to my work, and how willing I am to do my part to make their accommodations of my Lupus successful.  Also, my newest boss had many general questions about Lupus that were answered, raising his awareness and understanding.

Next, at the appointment with my rheumatologist, we talked about my FMLA form, the attached job description, and the attached recent performance appraisal.   This conversation was a great way for my doctor to know more about the daily challenges of my lupus, and to help her understand more about me and how I cope with Lupus and work on a daily basis.  She had gathered enough information to help her honestly evaluate my performance and the reasonableness of my request for schedule changes.

thV6NHX9CTBefore leaving, I also gave my doctor a copy of the ADA accommodation request I was going to file with the Human Resources office, so she would also be ready when they contacted her to talk about it.  It is very important to show that an employee can do the job well with the help of an accommodation, because ADA laws do not protect employees if a reasonable accommodation is not enough to help them do the essential functions of their job.  She filled out the FMLA form after the appointment and sent it to my employer’s human resources office.

A few days later we sat down for the scheduled meeting to discuss how my intermittent FMLA leave and ADA accommodations had been working out over the past year.  We agreed to continue my schedule adjustments that allow a later start to my work and the ability to use telecommuting during flares, when needed.  They also shared positive feedback with me received from my co-workers and affirmed that they knew of no negatives resulting from my schedule modifications.  This was also a great opportunity to tell them how grateful and thankful I am to have supportive bosses who believe in me and see beyond any limitations my Lupus causes.   After the meeting, the final paperwork filed with the Human Resources office documented we had meet and conferred about my accommodations, as the ADA requires them to do, and the human resources department responded by issuing their endorsement of the arrangements.

CommunicateCommunication and cooperation between employee and employer can make all the difference!  With some footwork and planning, a Lupus patient can coordinate workplace accommodations and flexibility for facing health challenges the might otherwise threaten their job.  Sometimes, in past years, my bosses have asked me to make some changes to the accommodations, and by meeting and conferring, reached workable solutions that were better for them, while also accommodating my lupus limitations.  I am grateful, and thank God frequently for the work situation that I have been blessed to enjoy, where they follow not only the letter of the ADA and FMLA law, but the spirit of it, also.

Lupus and reasons to go to work

Going to Work

Working is one of the critical challenges many lupus patients must face.  Work is seldom easy for anyone, with or without lupus, or people would not expect pay to entice them to report each morning to do their jobs.  Work — the term implies effort, expended energy, accomplished acts, labor and toil. None of these terms conjure pictures of pleasure and ease.

Yet we work on, because the simple truth is that money is an essential resource and work is one of the most honorable ways to get it.  (Discussing any dishonorable ways to get funds is well beyond the scope of this blog!)

Lupus is predictably unpredictable

Judging either work or disability as superior to the other, or more appropriate for a lupus patient, would be incredibly unkind and short-sighted.  However, some dueling pros and cons of work vs. disability do merit a little discussion.  For each lupus patient, the side of this debate they find themselves on may change from one season of their life to the next.

Lupus is predictably — unpredictable!

Work or Disabilty?

Some of us with lupus may never have to face the decision of needing to draw on disability benefits, but very many lupus patients do.  Patients with milder lupus may never experience symptoms that threaten their ability to hold down their job.  However, some of us find that activities of daily living nearly or completely become an insurmountable challenge.

Sometimes, life with lupus is just plain difficult, and this can threaten our livelihood.

Driving to Work

Some days I carry on a silent debate in the interior of my car while commuting.  Should I keep on working with lupus if it is very hard to do so?  As I work through my arguments against my imaginary debate opponent, there are a few competing points I make.  Routinely, for the fair and complete exposition of the issues, I switch sides with my opponent. As I weigh these issues, I invite God to join my debate, and to counsel my heart with His wisdom and to lead me to each change in path I should take.

The Case for Working

Many factors help make the case for continuing to work with a lupus disability, versus dropping out of the workforce due to chronic health difficulties.  No matter what it takes, some people like me feel compelled to try to keep their jobs as long as possible, even against sometimes almost insurmountable personal odds.

Here are some of my favorite arguments in support of working that compel me for the present to remain in the daily battle:

  1. Living always takes money and I have more of it when I work (pretty basic, I know, but extremely obvious and true)
  2. Life with doctor visits and prescriptions costs more money than life without them
  3. Superior medical care is available with employer’s insurance coverage
  4. Keeping busy, active and distracted from my personal health problems is better than sitting at home staring at the walls
  5. Opportunities to help others and make a difference contribute meaning to my work
  6. Socialization in the workplace promotes my psychological health and balance
  7. Self esteem is derived from completing workplace projects and accomplishments
  8. Fulfilling opportunities to mentor and train co-workers and work group team members give me satisfaction
  9. Having a motivation to get up and push myself every day keeps me active
  10. Intellectual stimulation and challenge keeps me vital and mentally sharp

The Case for Retirement

Here are a few of my opposing arguments, that, if they become true could cause me to switch sides in the debate:

  1. If I reach a point that continuing to work makes my lupus flares get worse and worse
  2. Working takes a lot out of me, and someday it may require more than I have to give
  3. Mornings are really hard, no matter what!  This won’t get easier
  4. The stress of my career and job responsibilities may become more than I can handle
  5. If I get to a point where I am pushing too hard and getting sick after every major project
  6. If persisting memory problems get bad enough to make managing workload and staff difficult
  7. If I need more rest than I can get in the evenings and on weekends
  8. When I reach the magic retirement age that my pension becomes enough to live on comfortably, and is not going to improve enough to merit working longer
  9. (Shudder at this thought) If we should ever see the repeal or undermining of protections given to people with chronic serious health conditions under the ADA or FMLA
  10. If I ever permanently lose the heart to fight the daily fight

Crossroad ahead

These are the some of the issues that are vetted out during my ongoing debate about working vs. disability.  It is during the most overwhelming times of lupus flare that I am forced to focus on the nearing crossroad ahead, to view the split in the path before me heading in two contrasting directions.  Several times in my career, I have approached the crisis of such a crossroad.

I keep working, and my debate continues.  In the quiet of my car I drive on toward work each day, and ponder the road that lies ahead. If in the interior of my vehicle, the speedometer, car radio, or steering wheel ever respond to my solo conversation, I will know with certainty that the long debate is finally over.

Until then, to quote the seven dwarfs of Disney cinema fame, I whistle and sing the happy song, “it is off to work I go.”

Lupus and the budget crunch

Balancing lupus and work

Balancing Lupus and work responsibilities can be a real adventure and difficult to manage anytime.  Lupus can also be really challenging when you have a huge work project underway.  The responsibility of a government law department’s budget is a huge project all year long, but during budget season, it gets especially crazy.  Budget season means spreadsheets, number crunching, pie charts, trend lines, expenditure justifications, and crazy, ridiculous long early and late hours at work.

Sometime in the coming days and weeks the annual budget season will come to a close. Budgets will be approved and hearings will end. We will soon have a budget.   Perhaps, we will even have our budget finished before congress does!  Budget study sessions and approval hearings are next on the agenda.  This means making presentations that analyze financial trends and project the future financial needs and conditions of the organization.

Budget, budget, budget!

My sole daily (and nightly) activity right now is budget, budget, budget.  Somewhere in all of this comes my taxes… by tomorrow at midnight! Turbo Tax, here I come.

Huge projects sometimes require long hours of overtime and shortages of time for other normal things.  Sleep, housework, home cooked meals, manicures, getting to the beauty shop, reading for fun, exercise, income tax preparation, grocery shopping, laundry, friends, playing music, or spending precious time with (very patient) people you love is squeezed into a few short minutes at the beginning and ending of each day.

All this describes life at my house, or perhaps I should say, my life at work, where most of my time is invested lately.

It is difficult to even find time to write.  Somewhere between putting my dog in his kennel for the night, taking medications, turning of the TV in the bedroom, and clicking off the light on my night stand — I thought I saw a small sliver of time waiting for me in the dark.  I’ve got just enough minutes to walk through the darkened house in the eerie glow of the cell phone in my hand. I find my desk and computer in the office at the back of the house and sit down.

Tomorrow is upon us

So, here I sit for five minutes, or so, thinking that my present work circumstances are probably not the norm for most lupus patients.  Thus far, I have been extremely blessed, able to continue working, while appreciating greatly the ongoing support I receive from a wonderful husband, bevy of co-workers and a couple of amazing bosses.  Did I mention how helpful my assistant has been?  Amazing!

When (not IF) I survive this crazy round-the-clock budget schedule and madness, I will gladly pull over to the right of the road, and go back to living life in the slow lane.

In the meantime, I am just thankful that my lupus has cooperated so well, and quieted down over the last couple of weeks, just when I most needed it to behave.  I am grateful to have been able to meet my work obligations.

Now, tomorrow is already upon us!  This sleepy girl is headed back through the house to go collect some precious shut-eye.

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