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Living with Lupus

Overcoming Difficulties Maintaining Employment with Lupus

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Lupus can get in the way of many aspects of day-to-day life. Working with lupus is possible – but may require some adjustments and a little self-forgiveness.

Muscular weakness, fatigue, stress, and doctors’ appointments can make work and school difficult for people with lupus. And we haven’t even mentioned brain fog which can add frustration and challenges.

Having trouble at work, even as far as not being able to work, is a not-uncommon issue that people with lupus face. Stories about these sorts of problems are common on lupus forums. However, many people with lupus do continue to work.

Work may be the main way that you have health insurance and it can help you afford the many clinic visits and lupus medications. So, how do you get through it? Because you can!

The key to staying employed is to learn your limits. You only have so much energy to spend and a lot of different priorities to spend it on. Fortunately, there is help:

If you can, communicate with your supervisors, your HR department, or your boss about your difficulties. It can potentially open the door for accommodations. But, be sure to know your rights.

Potential Accommodations You Can Get for Lupus

First, you are not legally required to tell your employer that you have lupus. However, the Americans with Disabilities Act (ADA) only protects you if the employer has been made aware of the disability. For this reason, it can be valuable to disclose your lupus diagnosis with your employer. You may want to wait and see how supportive your employer will be. But when you do disclose your lupus, at the very least, they cannot claim that they did not know. 

You have the right under the Americans with Disabilities Act (ADA) to ask your employer for “reasonable accommodations”. Accommodations can include:

  • Extra breaks
  • Closer parking spots
  • Telecommuting options
  • A shifted work schedule
  • Specially-designed, ergonomic desks that support the joints
  • A desk away from a sunny window
  • Different types of lights in the building

These accommodations are designed to ensure that you can still do your job! You cannot be fired for requesting accommodations or for having an illness. (Plus, providing an already trained employee support to do their job is more cost effective than firing them.)

 

So, what is a “reasonable accommodation?”

Unfortunately, this is up for interpretation. However, the law says this: They “must enable a disabled employee to perform his or her job (modifications to work stations, assistive equipment, flexible work schedules, changes in job location, etc.)” A note from a doctor can help nudge your workplace in one direction or another.

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Lupus can make it hard to enjoy working. But accommodations can help restore balance.

What can you can do to maximize your effectiveness at work.

  • Use Accommodations.
    • There is no shame in getting a little support, as appropriate to your needs and your job. In fact, you should go for it! Flexible schedules, remote working, note takers, special tools or protective equipment, dictation software, and screen readers are only some of the possible accommodations that could be useful for people with lupus.
  • Use Reminders and Apps.
    • Aside from the accommodations that your workplace provides, using sticky notes, organization apps, scheduling systems, and checklists can help make your work manageable.
  • Take Care of Yourself.
    • Eat properly. Try to consistently get a good night’s sleep. Stay up to date on your immunizations. Keeping yourself in good health through simple lifestyle choices helps your lupus symptoms and makes you better able to keep up with the stresses of work.
  • Take your Medications.
    • Lupus medications can have side effects, but you need to keep them up and make your doctors’ appointments. This will keep you as healthy as possible and allow you to manage your symptoms better.
  • Reduce your Workload.
    • This one can be tough. Try to know your limits and, if necessary, work with your employer to create a conquerable work plan. Reducing your workload and stress-load is key. Life is a long journey — doubling down today can lead to consequences tomorrow.
  • De-stress Yourself.
    • There are many stress-relieving strategies, including art, music, mindfulness and hobbies. Relieving your stress makes you better able to handle your life. Which could help you keep up with the demands of your job.
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What if I Can’t Work?

Taking care of yourself with lupus can be a full-time job in and of itself! Focus on your treatment, on reducing your flares, and on understanding your triggers. Additionally, current times are certainly impacting job security and availability, whether you have lupus or not.  

For people who are unable to work due to lupus, disability benefits can offer a financial safety net. Benefits are a stipend of money intended to pay for basic food and shelter and take some of the pressure off of people fighting their chronic illness. It isn’t much, but it can make a big difference. Read more here about what pursuing disability benefits is like, and how you can do it.

One of the best things that you can do for yourself, however, is to forgive yourself. You can’t control all of your lupus symptoms, and you can’t always control your energy levels. But, you can always try to do your best.

Comments (5)

5 thoughts on “Overcoming Difficulties Maintaining Employment with Lupus

  1. It’s hard for people diagnosed with lupus to handle things in life while having to strive against it at the same time, not to mention day by day. I wish that a better remedy would soon be invented so that everyone can enjoy life to the fullest.

  2. I’m a school teacher and my lupus seems to stay flared up now. I can’t really change much in my classroom. What do I do.

  3. Having a schedule problem at work. Changed my shift to 5:00 am – 2:00pm. I was working grom 7:00am -4:00pm. I have stress with this shift because i have to be up at 3:00am to leave at 4: 00 to get to work on time. Im so fatigued and in pain from this time change. Also fearful of losing my job if i complain.

  4. I am a female apprentice in a male dominated construction union. I work on a small crew with one foreman and 2 journeymen. I have been at this job for almost 2 months now and have had to call in sick 3 times. I have not disclosed my diagnosis but am wondering if I should to explain my absences so they don’t think I am lazy and/or not commited, disrespectful, etc… however I am worried to do that because, as a woman, I am already considered not as capable as my male peers by many (untrue and ill work side by side with any male apprentice to prove it). I was just diagnosed and have been working with my team of doctors (thank you union health care benefits) and I am confident I can, now that I know what it is, manage my illness. I am so dedicated to my work that I will do whatever it takes. I have quit smoking and am taking good care of myself, taking the meds as prescribed, staying in contact with my doctor, and reading up on lupus a ton. I want to convey this to my employers if I disclose this to them. It feels like a risk though. I dont know my foreman very well and I am still new to the local (almost a 3rd year) I want to establish a stellar reputation and thats why I want to explain my absences. But on the other hand, should I not say anything and just move on, doing my best? I am worried if my company finds out I have a chronic illness they will value me less (since being female is still widely considered a handicap in this industry). Anyone have any advice for me about any of this? I am so grateful for the opportunity my union has given me, I feel privileged and honored to be a part of a labor union, our values are extremely important to me and I take none of this lightly. I love my job and my crew and boss have been awesome to me. I feel like I have let them down so I want to explain whats going on, but I think it may hurt me.

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