At Home Careers With Lupus And Your Rights: EVERYTHING, You Need To Know
I’m going to tell you the laws in the USA that support your rights within a workplace and how to use them to your advantage. Plus, there are some great insights on what positions have accommodations that you may have never thought of.
How do I know all of this?
I was in the same position as you. I wasn’t sure if I could continue my job, how to ask for help, and get what I need without getting “let go”.
I was sad that my career was over before it even began.
I hated myself for having Lupus, for suffering so much in such a short amount of time.
Many times I wondered if my life would consist of struggling to work and struggling to have enough spoons to even take care of myself after work.
I hated that I had no positive impact on society and in my own life. How can I pay for this disgusting, life-altering in all the wrong ways disease?
How can I have a family one day and support it? How can I live my life sitting at home, broke, and not able to prevent symptoms because I can’t afford it?
That’s how I thought and nothing improved in my life. It actually got way worse.
I made terrible decisions. I somehow still graduated with my bachelor’s degree though.
I was still in school and I knew I’m never going to be in the healthcare field now. I’ll never be able to help people HEAL from disease, sickness, and pain. My goal was to be the physician assistant or nurse who didn’t dismiss people for their problems and write them a script that won’t work or worse, make their problems worse!
I was going to be the person who found the cause of the problems or refer them to someone who will take the time to do that too.
Don’t you want to keep pushing? Don’t you want to live a better, quality of life with Lupus?
Don’t you want to work at home with Lupus and have a career at home with Lupus?
Well, with this easy read, you’ll be prepared to advocate for your health while keeping your current position or finding a better career that fits your needs.
If you don’t want to read the details, check out “LUPUS LIFE HACKS®” throughout this article for sections 3-6.
The rest of the sections need to be explained because the government or workplace isn’t a black and white kind of deal.
By the time you’re done reading this, you’ll be the expert!
How The ADA AND ADAAA BENEFITS YOU
What Is The ADA
The ADA (Americans with Disabilities Act) started in 1990. Basically, it’s a civil rights law that makes sure there is equal opportunity for all people when it comes to goods and services, government programs and services and treatment in the workplace. If your employer has 15 or more employees, they must follow the ADA requirements for non-discrimination when it comes to salary, opportunity, positions, and so forth.
Our focus is on how it helps with at home careers with Lupus.
It prevents employers from discriminating against people with disabilities. A disability is defined by the ADA as a physical or mental impairment that substantially limits one or more major life activities.
You have to have a history or record or you have to be perceived by others to have some kind of impairment. Your doctor would be the perfect person as they have your medical history recorded.
What Does The ADA Qualify As Impairments?
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.
Also, they can’t use your disability as a reason for why you didn’t get a raise or you were let go. They must have a legitimate reason tied to your work ethic and so forth.
Another example of workplace compliance is, for those who are wheelchair bound, all businesses must have an entryway that allows you to enter their building safely. If there was something that couldn’t be supplied to you in office due to whatever restrictions or rules that a building may be grandfathered into, but you are qualified for the position and start working there this can be used to change your position from in the office to at home.
You just have to apply to FMLA. We’ll get into the details for FMLA shortly.
Anyway, with the ADA, these disabilities can include physical and mental that someone was born with or that occurred from injury, trauma, or disease.
Do You Have To Tell Your Employer Before You Are Hired?
That’s up to you. The ADA protects you from your employer. Your employer is limited to how they ask questions and what questions they ask. “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
What Is the Adaaa?
ADAAA 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.
For those who have disabilities like Lupus, RA, and so forth are not a constant limitation for many. But, they do when a flare is active.
So, the ADA protects us due to this adjustment! Here’s a quote on the EEOC’s fact sheet, “An impairment that is episodic or in remission is a disability if it would substantially limit a major life activity when active.”
Now to the whipped cream and cherry on top kind of stuff!
FMLA and ADA is what you apply to through their chosen insurance carrier at your workplace. You will be assigned a case manager and they will work with you, your doctor, and your employer to have everything you need to be successful at work without sacrificing your health.
Even if the request that you want is already offered, it is wise to contact them and open up a case to protect your position.
Do you want to work from home with Lupus?
Work from home because of migraines?
Working at home with Fibromyalgia, IBS, IBD, Chrons disease?
Actions You Can Take With ADA / ADAAA Support:
1. Transitioning From Full Time (40 hours) To Less Than Full Time
If you find that you can’t afford to work part-time(25 or less hours), but you can get by with 30 hours a week and your home life is suffering because you used all of your spoons at work, reduce your hours with FMLA support.
If your health is being affected by the stress of your job, get started today!
If you are exhausted from working all day and it stops you from enjoying evenings with family, cooking, or taking care of a household you should reduce your hours. It’s not worth it. It is directly feeding your disease.
Don’t feel guilty. Your manager has a boss who is crunching numbers and reviewing who is contributing to their success.
When you don’t have FMLA and the ADA on your side to support the fact that you have a disability, they can let you go because you came in late too many times or missed too much work and are “unproductive”. There is no proof of your invisible illness, which is why FMLA is important to have.
So, put your health first and still be productive at work.
This may even improve your work habits and the quality of your work because you’re not as tired and stressed.
2. Work From Home and Reduce Hours or Keep The Same Amount Of Hours
Just because you have Lupus and go through flares doesn’t mean you are only allowed to work from home during a flare either.
You can work from home with Fibromyalgia, work from home with Lupus whether you have a flare-up or not. This is what I did using ADA.
My goal of doing this is prevention. I’ve actually had fewer flares working from home. It’s a cleaner environment(less sick people coughing everywhere), less stressful, and it allows me to work around how I’m feeling that day.
Short term symptoms are triggered by the sun, the heat, stress, food, or lack of sleep. Variables that can occur daily.
FMLA and the ADA are on your side. You may even get lucky and have a case manager with accommodations too. They’ll be even more understanding when reviewing your file to approve you.
3. Get Up Later In The Morning To Go To Work
I know how hard it is to get up in the morning, especially with our issues with pain, insomnia, and sleeping. I used to be an early bird! I’d wake up, go to the gym, and be at work by 8:30 am. Now? I’m lucky if I get up before 9 AM.
I need 10 hours of sleep a night to function the next day. I’m sure you do too.
With reduced hours, you can work less and go into work later. This can be super helpful if you have lots of doctor appointments and you’re a late morning riser. Just make sure this is worked out with your manager so you don’t get into trouble and you are still able to get high priority work done.
4. Sign-Off or Make Your Own Hours Based On How You’re Feeling
This is a little tricky.
You want to be respected in the workplace, be a positive contribution to your employer and show you are needed. So, this would be for someone who isn’t affected by their autoimmune disease too much.
Are your hands inflamed or in pain from typing on the keyboard? Is it raining and causing joint pain? Do you have a migraine and/or are nauseous?
You’re having a bad symptom day at the office or while working at home. Make sure you get all of your time-sensitive tasks done that day. Anything else can wait until tomorrow or later that night. Just let your manager know ASAP and sign on later or finish your work tomorrow.
Do afternoon naps help you function better due to sheer exhaustion or insomnia issues? This is the right scenario for you!
Everything You NEED To Know About FMLA
What Is FMLA?
The Family Medical Leave Act (FMLA) has a lot of juicy insider ways to allow you to take care of your personal needs while being considered important and an asset to your company. Combining this with the ADA, you’ll have no loose ends to worry about.
It does A LOT of things that can help you and your family.
3 AMAZING FACTS ABOUT FMLA:
- This federal law allows 12 weeks of unpaid leave for qualifying employees (we’ll get into that) without the risk of losing your job. You can even get up to a year!
- Also, you still get your health benefits even if you’re not working! DOUBLE WIN!
- It allows you to work at home( in combination with the ADA) with your doctor support and through his/her recommendation. All you have to do is ask.
It’s a complicated law, so I’ll get into the most important details of what it will do to help you live a quality life while working at home with Lupus.
What Are The Basic Requirements?
- You must work for your employer for 12 months and a minimum of 1250 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.
How Do Employers Determine the Applicable 12-Month Period?
FMLA created a few options for employers when calculating the 12-month period they will use.
Employers can select:
- The calendar year;
- A fixed “leave year”. This can be based on any 12-month period, such as a fiscal year, or the anniversary of the employee starting with the company;
- A 12-month period beginning with the date that an employee’s first FMLA leave begins
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 SO 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.
Speaking to your Manager & HR Without Saying Too Much
Remember, HR is not your friend and no matter how cool or nice your boss/manager is, they are not your friend either. Keep it short and sweet. Your health and information about your health is a NEED TO KNOW BASIS only.
For example, when my manager asks how I’m doing or tries to better understand what Lupus is, I describe it in multiple ways.
- I literally give the definition of Lupus to them. It’s an autoimmune disease that attacks different parts of the body at any time, causing inflammation in bones, lungs, brain, joints, heart, kidneys, GI, etc.
- I tell them how it affects me, personally. “The exhaustion makes me need 10 hours of sleep to be able to function. Typing all day makes the bones in my hand inflamed. So, at night, I ice them and apply CBD cream that works wonders.”
- “It makes me exhausted. Sometimes my brain fog is so bad and I feel dumb for asking the same question to you or getting easily confused.”
- “My ankles swell up if I’m in the sun for more than 20 minutes. My body is in pain too.”
- “When I don’t have brain fog, I’m on my “A-game” of course. Those days are the best and I can’t wait to feel normal again.”
- “I’m trying this new medication and it seems to be promising so that I can make sure my reports are done correctly and I don’t waste too much time.”
- “I know it can be frustrating for you if you’re busy working on something, it’s frustrating for me too!”
- I thank them for their support and concern. This is important. You want them to feel for you, have a little soft spot and connect. Be positive, help them understand what an invisible illness is.
This is a fine line. Don’t connect to the point where you’re always complaining because they’ll think you’re not an efficient worker.
Speaking to HR:
Do not ramble. Respond to the question, never add more.
“I need FMLA 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. Many times, the same question is asked multiple ways, don’t fall for it.
HR does not want you to do this. HR will probably ignore you, play games(that happened to me).
They actually lied for months about contacting other people to determine how to move forward with me working from home. They pushed me around from department to department. Every person in each department misunderstood what I was asking for.
Although I was CLEAR on my request which was, “Doctor requests to work from home full time (40 hr/week)”.
They kept saying no you can’t reduce hours. You can’t work from home because your manager says they need someone full time, in the office. Which wasn’t true. Other people worked at home or in a different state/area.
5 months later of going back and forth, they said they have reached out to a medical carrier to have a non-biased viewpoint.
First, this is biased since my employer works with them to offer the medical carrier’s plans to my employer’s clients and employees.
Second, THEY NEVER REACHED OUT!
3 (ish) months later, I called the medical carrier myself, guess what?! NO CLAIM/CASE WAS OPEN.
So, after I knew this, I reached out to HR again and asked for a case number.
They lied and said case numbers were not provided and not needed in this case. My response, “How would they know what/who you’re calling about when discussing my doctor’s request”.
They ignored my question and gave general responses.
I had to push and bug people non-stop.
Once I threatened to write a lengthy email to someone even higher, magically, a case was opened and a case number was given. Within 1 week I was working from home.
Moral of the story:
FMLA cases are only open for a max of 2 weeks.
IF it takes longer, there is a problem with your employer. You need to be your own advocate everywhere you go.
LUPUS LIFE HACKS®
- Your disease and symptoms are a need to know basis only. Your manager or boss is not your friend at the end of the day. They have a business to run. Connect for purposes of understanding and compassion. Lupus is unknown. It’s an invisible illness.
- Explain how your autoimmune disease affects your day-to-day. How typing hurts and you ice your hands when you get home. How your body-wide pain feels like someone is beating you with a bat with the smallest touch or bump.
- Thank them for the support and understanding. Reassure them you are an asset and adjustments that are made will increase your quality of life and work.
- HR IS NOT YOUR FRIEND. Be careful how you answer questions. Do not ramble. Respond to the question, never add more. “I need FMLA 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. Many times, the same question is asked multiple ways, don’t fall for it.
- 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”.
- YOU ARE YOUR ONLY ADVOCATE. Take this sentence to heart in every scenario that involves your health and wellness.
- FMLA cases are only open for a max of 2 weeks. If it takes longer, something is off with your HR department and you need to get to the bottom of it.
Speaking with Coworkers (Small Talk)
The same rule applies here. Your co-workers will get mad, jealous, annoyed at you for having all these cool “perks” because you have an invisible illness, remember. THEY DON’T UNDERSTAND.
You’ll have friends who support you, you’ll have enemies, you’ll have fake friends. What do they all have in common? They may sympathize, but they see you’re healthy on the outside. Co-worker, “Oh Sarah has a migraine again, she’s in pain, she always has health issues, so she should quit if she can’t do her job.”
They want to know why you’re “never” at work and how could you possibly have a job still? They work hard alll day and you don’t!
In reality, you’re working harder. You have a chronic illness, your pain is increasing throughout the day, with stress. You go home and pray to god you make it the next day and hope for the weekend to come faster and never end.
Now what do you do?
Depends on the personality, depends on your relationship. When asked how you’re doing, get real.“I’ve been pretty good, I had a fever last week for no reason, so that made me tired & exhausted. But, I STILL WORKED.”
Sticking with describing how pain impacts your life and what you do to be positive and tell how you are proactive shows you are a fighter, you are a sufferer, and you are fair.
Showing this gives you more support from your co-workers.
Lastly, don’t ever talk about your open cases with FMLA until you’ve been approved.
LUPUS LIFE HACKS®
- You’ll have supportive co-workers who can relate and you’ll have more who can’t. Let those who are negative and salty about their lives, talk about you. You don’t need that negativity! Stay away from energy suckers. It can actually trigger flare-ups due to stress.
- People LOVE talking about how their problems are worse. To win people over, let them talk about themselves. Be relatable too.
- Sticking with describing how pain impacts your life and what you do to be positive and tell how you are proactive shows you are a fighter, you are a sufferer, and you are fair.
- Don’t talk about FMLA or your open case until you have been approved. EVER.
How To Speak To FMLA/ADA Case Manager
Be completely honest. Connect, laugh, offer advice if they have similar problems. Make sure you state how your home is a better environment. Your heating pad is there, you can’t forget your meds (brain fog), you can lay in bed on a bad day and work on your laptop still too.
These people need to know exactly what Lupus symptoms you have.
To prepare for this call, write in a journal when you have symptoms, what they are, and how long they last.
- Migraines from the lights at work can be avoided if I work at home or If I can work PT at home.
- Getting up 1.5 hours earlier to sit in traffic kills my sleep time. This causes my body to be in a lot of pain because I didn’t get enough sleep.
- Being at work and in pain all day isn’t as comfortable as being at home in a relaxed environment.
Your goal is to put your health and wellness first, without sacrificing your career. In order for you to continue your job, you need to work at home.
LUPUS LIFE HACKS®
- To prepare for the call with FMLA, write in a journal when you have symptoms, what they are, and how long they last. How it occurs at work and what triggers it at work.
- Be completely honest. Connect, laugh, offer advice if they have similar problems. Make sure you state how your home is a better environment. Your heating pad is there, you can’t forget your meds (brain fog), you can lay in bed on a bad day and work on your laptop still too.
- Make sure your doctor fills out the paperwork. If they say they won’t do it, have your case manager call them to better explain what FMLA wants from them. They just need the doctor to sign a note saying “work from home with Lupus” or whatever the request is. Everything else can be left blank if it doesn’t directly pertain to lupus.
- It’s okay to tell them this is for preventative measures too.
- Being at work and in pain, all day isn’t as comfortable as being at home in a relaxed environment. The office is an exhausting, cubical ridden, small place with too much negative energy. Your goal is to put your health and wellness first, without sacrificing your career.
Work From Home Careers With Lupus
If you’d like a current list of jobs, a direct link to companies, salaries, and more, Volume II is now available.
For your FREE UPDATED guide, click here.
**FREE Bonus content: Includes search terms to use and avoid and list of companies to that offer a wide variety of at home positions. So, this PDF is perfect for anyone who reads this at any time.
However, the faster you download the closer you are to having a job that fits your needs.
You’re probably thinking, I don’t have experience in some of these areas. I haven’t worked in a while and I’m behind on my excel skills and so forth.
Don’t start this off with I can’t, I forgot, I’m scared of failure.
These are natural thoughts and responses.
However, you can teach yourself all of this for FREE. Create a YouTube account if you haven’t already and follow people who give free lessons in excel, word, and PowerPoint. Plus, there are videos of how to use any software that you may need, medical terminology, any job skills. Think outside the box to get ahead!
Whatever is needed for the job, you have all the resources to learn for free and on your own.
You can learn from others through their videos on how to find discrepancies and have a detail-oriented eye for error.
You can learn work-related vocabulary too. Learn and practice while you’re applying to various jobs.
How do I know you can do this?
I did it! I didn’t know much about excel. My position is all about excel, formulas, finding discrepancies, solving problems, and making reports about everything that involves monayyy.
So, don’t get discouraged.
Adjust your needs, learn, and apply! You have nothing to lose!
What are the basic necessities for all of these?
GREAT INTERNET. (usually a bachelors degree. Doesn’t matter what, if you make a killer resume)
They should provide the physical tools needed to work at home with Lupus.
Virtual Assistant: Who says you can’t be a personal, virtual assistant? YES, YOU CAN.
You can even have multiple PT virtual assistant jobs to pay for your bills and prevention treatments. The best part, these are usually flexible with hours.
Sales: with inbound leads. This means a potential customer is calling because they may be interested already. No cold call jobs, that is stressful!
Customer Service: All you need is great internet, a headset (they should provide), and a laptop or computer( they provide), and a friendly personality.
Banking: Of course, not a bank teller. It’s a behind the scenes bank job. Can you learn quick? You can easily work from home. At Citi Bank, they give laptops for days when you must work from home. So, with FMLA support, you can have some wiggle room!
Data Entry: Technology makes it easier for companies to hire independent contractors to do this stuff at home. It saves them space in the office!
Administrative Assistant: This is a little different as compared to the virtual assistant. This person can take care of employee scheduling, billing, create reports, re-scheduling team meetings or patients, buy office supplies and so forth.
Medical Transcription: You’ll need to learn some medical lingo for this and get a 1-year certificate. But, if you’re in the planning stages to shift a career where you can work at home with Lupus, then this may be a good gig for you!
Medical Coding/Billing: Typically, you need some knowledge on medical codes. There’s a free app I used for this when I did medical coding for a practice I worked for. However, sometimes you need formal training at work or a certificate before working from home. So, this could be temporarily in office.
Nurses: Usually RN’s, some are LPN’s too. If you’re a nurse and your body is at wit’s end, this could be a great lateral move for your career!
- Medical call center agent
- Case management
- Legal nurse consultant
- Health care recruiter
- Project manager
- Nurse manager
- Health IT/Nursing informatics specialist
Analyst: An analyst is a general term for a position. You can be an IT analyst, business analyst, data analyst, consulting analyst, healthcare data analyst.
Mainly, you would:
- Interpreting data, analyzing results using statistical techniques
- Developing and implementing data analyses, data collection systems and other strategies that optimize statistical efficiency and quality
- Acquiring data from primary or secondary data sources and maintaining databases
- Locate and define new process improvement opportunities
Sounds scary, I thought it was before I took my data analyst job. But, it’s not. Resources are there for you to learn and grow.