3 Lupus Life Hacks for Keeping Your Job (If You're Able to Work)

Lupus and careers do not mix well for most of us. Living in chronic pain that gets worse as the day moves on is such a challenge and mentally exhausting.

Having to quit your job is a disheartening reality for many of us and something I almost had to face myself as I deal with eight autoimmune diseases. Lupus is what started it all and is the most detrimental to my health and wellness.

In fact, two out of three people with lupus aren’t able to work full-time, and one-third are considered disabled.

However, this post isn’t about how much we can’t do because of lupus, but how we can keep moving forward even with lupus!

There are laws in the U.S. that protect our position whether you’re searching for a job or scared of losing your job.

If you want to:

Work from home due to any chronic condition (I’ll focus on lupus)
Have a flexible schedule to accommodate last-minute doctor’s appointments or high pain days/flare-ups
Modify your current roles and responsibilities
Reduce your hours because of symptoms like brain fog, fatigue, pain or illness
Receive employer-paid desk enhancements (ergonomic desk, mouse, chair, etc.)

This article is for you!

I’m going to tell you how I’ve saved my career as an analyst in a tech company that caters to the insurance industry by using two laws called ADA and FMLA. These laws can work in combination or separately, depending on the need(s).

By requesting for different types of accommodations using support from my doctor and these laws, my employer had to listen and make changes so that I can still contribute in a meaningful way without sacrificing my health.

So, without further ado, let me introduce to you the law called the ADA and ADAAA. This baby is what you want to tell your employer. Once they realize how educated you are and that you’re going to be an amazing self-advocate, they can’t intimidate you any longer.

ADA

The ADA — Americans with Disabilities Act — was enacted in 1990 to allow those with chronic conditions, physical/mental impairments and disabilities to have equal rights in the corporate world.

What does the ADA quality as disabilities?

There are no specifics from the ADA about these “impairments,” but I know from working in the insurance industry that something as “small” as migraines are debilitating enough and they can’t discriminate. It makes sure that your employer doesn’t withhold a higher position, increased pay or a job from you because of a health problem that is out of your control.

Rules:

The employer must have 15+ employees to abide by the ADA law
You must have a history or record of this disability, your doctor would be perfect for this.

Do you have to tell your employer before you are hired?

“It restricts questions that can be asked about an applicant’s disability before a job offer is made, and it requires that employers make reasonable accommodation to the known physical or mental limitations of otherwise qualified individuals with disabilities unless it results in an undue hardship.” – ADA

ADAAA

ADAAA (The ADA Amendments Act of 2008 ) became effective in 2009. This is the amendment that made it possible for many more people to be protected under the ADA. Previously, “disabilities” were not that broad. For example, those who have cancer or epilepsy are now represented.

FMLA

Three amazing facts:

1. This federal law (Family and Medical Leave Act) allows 12 weeks of unpaid leave per year for qualifying employees (we’ll get into that) without the risk of losing your job.

2. Also, you still get your health benefits even if you’re not working! Double win!

3. It could allow you to work at home with your doctor’s support and through their recommendation. All you have to do is ask.

Rules:

You must work for your employer for 12 months and a minimum of 1,250 hours (so a little over 24 hours a week).
If you work for the government at the federal or state level or in a school, they must comply.
If you work for a private company your employer will have to comply if they have more than 50 employers for at least 20 workweeks out of the previous or current year.

What qualifies for FMLA leave?

You can’t work because of a serious medical condition
You have to take care of an immediate family member with a serious medical condition (so your significant other can do this if you’re very sick!)
The birth and/or care of your child
Placement of an adopted/foster child
A “qualifying exigency” that happens out of the fact that your spouse, child or parent is on active duty or has been called to active duty for the National Guard or Reserve in support of a contingency operation

Lupus Life Hack #1: How to Easily Apply to ADA & FMLA

Contact your disability insurance carrier and say you’d like to open an ADA/FMLA case.
Let your HR department know after you’ve talked to your manager.
Contact your doctor to let them know documents will be sent to them and to fill it out ASAP. If they give you a hard time, have your case manager contact them.
Cases are open for a max of three weeks. If something is off, reach out consistently to your HR department.

Documents don’t need to be in-depth. Basically, your doctor just needs to write down how lupus affects you.

Lupus Life Hack #2: How to Get Approved

Journal how your lupus symptoms interfere with work and your quality of life so that you don’t forget a thing (#brainfogproblems). Tell them how your accommodation improves your life. Examples of what to journal: “A heating pad is easily available at home along with meds and other items.” “Lying in bed while working is easier on high pain days.” “Flex schedule will help protect me from being fired when I have a flare-up and need to rest.”
Be honest and connect with your case manager. Keep saying how your accommodation will help you have more family time and will help you be a productive worker because you’re less stressed out due to “x, y, and z.”

Lupus Life Hack #3: How to Talk With HR

HR’s goal is to keep you in the office and to have zero accommodations. This is the sad reality of most companies. So, you are your best and only advocate! Be prepared!

Try not to ramble. Respond to the question(s), never add more. Many times, the same question is asked multiple ways, don’t fall for it.
“I need FMLA/ADA so that I can ensure my work is completed at a high level of efficiency to continue my job while all my health needs are met.” That is all you need to say. Repeat this.
Keep every conversation saved. If you talk with a manager in person about something, follow up and re-state their promise over email and thank them for the accommodation. This is important. If it’s not recorded, it’s hearsay or “you may have misunderstood.”

Good luck on your journey! If you guys have any questions, please ask away! Happy to help where I can!

P.S. Get creative with your accommodations so that you can still be productive without putting your health at risk.