One Patient's Positive Perspectives

Posts tagged ‘FMLA’

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, sick days and alphabet soup

White sandy beaches in my dreams

I consider myself very blessed as I approach what will likely be my last few years of a long career working in government law.  My public employer has a generous benefit leave program that rewards long time employees with more annual vacation than new hires. While it might sound appealing to use mine for month-long vacations in the Bahamas, swimming and sunbathing on white sandy beaches, I don’t.  Too much sun and ultraviolet exposure would surely send me into a whopping lupus flare!  Like most Lupus patients, I need to use my leave time for more than recreation.

The alphabet soup of sick leave

Alphabet soup of sick leave

My total annual leave time is a generous 49 days, including vacation days, personal days, and sick days, plus legal holidays.  Usually, about half my vacation days are spent as originally intended on recreation, but the rest has to bolster my sick leave account when it gets overdrawn.  A critical part of requesting an effective ?Americans with Disabilities Act (ADA) covered accommodation for Lupus or another similar chronic health problem is obtaining approval to use vacation leave instead of sick leave when the sick leave is exhausted.  Additionally, the ADA and the Family Medical Leave Act (FMLA) together give employees with disabilities or other serious health conditions many important protections from negative employment actions due to covered absences from the workplace.

I am thankful that my employer’s disability-friendly leave policy permits Fair Labor Standard Act (FLSA) exempt salaried employees to use leave in half-day increments, in comparison to FLSA covered employees who are paid hourly wages and use leave in hourly or lesser increments.  Most traditional workplace leave policies require salaried personal to use leave time in whole day increments.  This policy is helpful for employees with chronic health challenges, especially when they only need partial days off work to for doctor appointments or on days when their illness forces them to work a partial day.

What’s causing the need for extra sick leave?

I use up most of my sick leave in half-day increments due to the nature of my Lupus.  All auto-immune diseases tend to have more severe symptoms in the early hours of the day.  This is partly due to how auto-immunity works and the body’s metabolic activities during sleep.

Apoptosis Programmed Cell Death

Every person undergoes an ongoing process of old cells in their body dying and new cells being formed to replace them.  In a healthy person, their cells live out their normal life span.  For example, some cells in the blood live only a few hours, digestive system cells live a few days, skin cells live a few weeks, red blood cells live several months and brain cells live all the years of a person’s life.

In the case of Lupus, damage to a patient’s body cells is aggressive as it over-actively attacks connective tissue cells, destroying them at an above normal rate while the patient sleeps.  The aftermath of this faster than normal cellular death (apoptosis) clogs up the body’s tissues, systems and organs with cellular debris (the biological building blocks of the destroyed cells.)  It takes a body time to unclog the brain, organs, fluids and tissues.

The result in the meantime is inflammation and impaired function of involved body parts.  For me, that means joint swelling, pain and stiffness, mild to significant cognitive impairment and overall malaise, ache and discomfort.

Much of my sick time off work due to lupus is usually because of days when I wake up feeling somewhere in the range of  “just plain yucky”, “really rocky” to “completely indisposed.”  (One of my doctors with a great sense of humor likes to kid me when I use the word “yucky” that it is such a highly specialized “medical” word!)

Symptoms are most active in the morning

Lupus symptoms are almost always more active in the morning hours, but tend to quiet down more with each hour that passes. On especially bad mornings, I try to only take a half-day off sick in the morning, and try go to work for at least the afternoons when possible.

With my lupus symptoms, even in times of severest flare, often only the morning is unbearable, and by afternoon my symptoms let up.  On bad days when I finally feel tolerable by noon, I can recover at least part of my work day.   My bosses like the fact that I still show up most bad days, and can deal with the business that most needs attention, especially during periods when I am having increased lupus problems for days or weeks at a time.  Sometimes, I also am able to telecommute on afternoons when my morning lupus symptoms are more severe or take longer to let up.

Other uses of sick leave because of lupus

Other uses of sick leave

A healthy (no pun intended) part of my sick leave and vacation time is spent going to and from various medical appointments.  On many half sick days I visit a host of doctors, labs, radiology offices and the hospital cancer treatment center where I receive my monthly Benlysta infusions.

I spend many days each year in my family practice doctor’s office, as well as visiting my rheumatologist, chiropractor, dentist, gastroenterologist, dermatologist, podiatrist, and orthopedist. If my neuropathy keeps progressing, I may have to add a neurologist to the group.  Thankfully, I am NOT one of the 50% of lupus patients who have kidney involvement, so there is no nephrologist on my list!

I also use a few days off each year to rest up after major life events or after vacation or business travel, to try to prevent flares of my lupus.  I try to plan these rest days strategically to allow that extra “recovery day” to sleep in, take naps and get rest and repair time before returning to my regular work duties and schedule.  Also, I telecommute one day each week and have the opportunity to work from home once in a while on other days during times I am in flare or am housebound on “indisposed” days.  This has proven to help bolster my overall health and resistance and proactively help prevent fatigue and lupus problems.

Asserting rights under available job protection laws

Asserting ADA and FMLA protections

It is extremely important for any lupus patient in the U.S. with career threatening symptoms to assert their legal right to the protections available under the ADA and FMLA.  Proactive communication at work and with the doctor, and an interactive dialog may help the employee and employer agree on a reasonable accommodation for the employee’s disability under ADA.  With proper notice, the FMLA can protect against job loss due to extended or intermittent absence due to a serious health condition.

When I was first diagnosed with lupus in the early 1990s, not long after the passage of the ADA, one of my closest professional peers strongly admonished me to keep my diagnosis a secret at work.  She sternly warned me that she feared my job would be in jeopardy if my employer ever learned I had lupus.  I am glad to say I did not follow my dear friend’s advice.  I went ahead and told my bosses about my lupus diagnosis, and they have supported me with kindness and great understanding.  In turn, I have been a very loyal and productive employee.


I am glad to say that after 22 years in the same job I held when I was diagnosed with lupus, my employer has followed the spirit and the letter of the ADA and FMLA laws.  This is one of the things I regularly thank my employer and God for, realizing that not everyone’s lupus and career have this type of positive outcome.  I am grateful, but mindful of the many with lupus and other chronic illnesses who unfortunately, don’t have the same story to tell.

Lupus, a lovely chat and a legal luncheon

Meeting someone new with lupus

Yesterday, I met someone new that has lupus.  I had a wonderful chat with her and her son, and thoroughly enjoyed our visit as we sat outside for an hour, enjoying the end of a summer morning at a Starbucks in downtown Phoenix.  I learn something every time I meet another lupus patient, and yesterday was no exception!  The strength and endurance of this lovely woman impressed me deeply, as she shared about the many challenges and changes that lupus has brought into her life over the past five years.  Her son joined in our conversation, and seemed very understanding and supportive.

Amazingly unruffled with multiple autoimmune diseases

It was amazing to me how unruffled she seemed about facing multiple auto-immune diseases, each singly enough to disable her.  With Lupus at the center of her health battles, like so many other women with lupus, she has been unable to work.  Lupus flares and repeated hospitalizations have interrupted her attendance on the job.  My personal health challenges with lupus just seem to pale in comparison!  As I drove to an afternoon employment law seminar, I reflected on my conversation with the truly amazing woman I had just met.

Legal updates on FMLA and ADA

Unfortunately, the too many lupus patients find themselves in a similar situation: unemployed due to their health.  Despite the protections of the Family Medical Leave Act (FMLA) and the Americans with Disabilities Act (ADA) the statistics are not very good for many lupus patients who lose their jobs.  Later, as I sat through lunch and listened to a lawyer speak about recent legal updates to FMLA and ADA, my mind wandered back to the woman at Starbucks, and the others I know like her who became unemployed when lupus got in the way.

Reminded again to be grateful!

I am reminded once again to be extremely grateful and thankful for my job.  I have been able to stay in my career, and have immense amounts of encouragement from others.  The attorneys and support staff I work with, and my husband, family and closest friends all seem to stand by cheering me on.  Without them, my story could have come out very differently.  I just wish every lupus patient could have the blessing of an accommodating employer, and the encouragement to face the changing faces and impacts of lupus.

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