Many people with lupus can continue to work, although they may need to change their work environment. Flexible work hours, job-sharing, and telecommuting may help you to keep working. I think it may be helpful to begin to make such arrangements soon after you have been diagnosed with lupus. Depending on the severity of your lupus, you may be unable to work. Lupus is one of the most unpredictable illnesses, and you never know when your lupus will flare up, which can be annoying, especially if you are working and calling out of work often. Here are a few lupie testimonials on lupies who still work despite having lupus.
If you are suffering from lupus and are unable to work, you may be eligible for social security disability or SSI benefits. Although the process may seem overwhelming, there are certain blood tests that can determine the severity of your lupus. Unfortunately, lupus is often stigmatized, which can make it even more challenging to receive social security disability benefits. However, if your application has been denied, do not give up hope. Keep appealing and consider seeking the assistance of a disability lawyer. If you require any help with the process, please feel free to reach out to us at LupiesUnite@yahoo.com.
Sheilahe Brown
“My name is Sheilahe Brown, I am a lupus warrior as of August 2013. I have lupus nephritis. I am a retired competitive bodybuilder. Unfortunately, when you get to a pro status level in any market, there is a certain caliber that is required of you I felt that I was no longer able to attain that caliber of Physique after I was diagnosed. But I did not go down without a fight. Now I am s posing coach, a fitness show promoter and a Brand Ambassador.
I passionately believe that my healthy lifestyle that I had before I got diagnosed saved me. Yes, I get my self-pity days and I get scared and worried but that is when you come together with a strong supportive and positive support group that helps you through these times. I passionately believe that Lupus is the most misunderstood disease. I want to help everyone to understand it to be empathetic to it, not sympathetic. On my good days I wake up around seven or 7:30am and meditate. I go to the gym at 10am and I start my day. I am done with working out I get a burst of energy that helps keep me going. But listen to your body, when you are tired, lay down for a minute.
While you are laying down, put on a motivational podcast or video. Start journaling, start tracking everything on the days you do not feel the best and the days when you feel on top of the world. You would be surprised that whatever you journal might help somebody else. Finish goals that you possibly did not get a chance to finish in 2019. We have a chance to start all over again with a brand-new decade.”
Aniysha Trice
“My name is Aniysha Trice and I battle with Lupus Nephritis. I am currently a dialysis patient waiting on a new kidney due to Lupus. Despite my diagnosis I am still employed full time as a Counselor. Maintaining employment and dealing with Lupus can be tough. Throughout all the symptoms that I experience I learned that I needed to have self-discipline in order to maintain employment. Some of the things that I do is to make sure that I am getting the right amount of sleep and taking the time off when I feel like I cannot do it. I keep my health first and try to stretch each morning. Working keeps me active. I try my hardest to avoid stress. I also make sure that I do not put the job before me.”
Samantha Nuamah
“Working with Lupus has always been a challenge. I was diagnosed with Lupus Nephritis at age eleven and I started my first job with a worker permit at age fifteen. Prior to starting any job, I make sure the managers and supervisors knew I have Lupus. Since having cutaneous lupus erythematosus, lupus is not visible to others, most employers do not think twice about you calling out sick or not being able to complete a task. Once you are hired and have your first flare up, which may cause you to be out for a day, couple days, weeks, or even months.
I worked at a great establishment where I loved my coworkers, managers and supervisors, I worked a whole six months straight without having any flare ups. Tragedy struck and I was having severe joint pain and shortness of breath in addition to fatigue. I took a couple days off using my leave to figure out what was going on with me. My doctors told me having flare ups is just part of having lupus, so I took some time off to rest. Knowing the essential role I played at work, I only took three days off but tried my best to push through to hurry to return to work. The symptoms proceeded so I took another three days off and returned to work.
Things were getting worst although my employer claimed to understand, they started cutting my hours blaming it on a productivity issue. I ended up being rushed to the hospital one night for shortness of breath and my lungs were filling up with blood and fluid, I was scared about what was happening, even more scared that I could not return to work and lose my job or be switched to part time. Most people would think this was a good thing but all I could think about was losing my health benefits, I was intubated and woke up on dialysis. My life was completely turned upside down, I could not fully return to work at first because of the changes I was dealing with, still trying to recover. My job tried understanding but informed me that I had to move to part time. Being a part time worker, you do not receive health benefits, even when I had to force myself into work after dialysis three times a week.
Although my job agreed to let me stay full time only if I picked up my schedule where I left off at, I was killing myself just to keep my health benefits. I eventually ended up switching to peritoneal dialysis which gave me more work flexibility, but it was still rough because I had to find sterile places to do my treatments on my lunch breaks. Even now after having a kidney transplant, working full time is still a struggle. Mornings where your joints hurt and you fight to get out of bed, just to make it to work on time where the pain continues sometimes throughout the day.
I had to explain to my coworkers that I am not feeling well again which is every other day or twice a week. You may also go into work feeling great being productive but than halfway through the shift, it starts raining and your joints lock up or you start not to feel well and must leave. The two current industries I work in are health care and recreation and both are challenging to keep up with especially when you are out sick. I am currently blessed to have a great and an understanding team supervisor that allows teleworking opportunities for me when I am unable to remain at work. You can only use sick time until it runs out and while FMLA is helpful it does not begin to take care of half of my bills. It is helpful to let your employer know up front about your illness and keep open communication with them at all times and have backup plans in an event you need to be out for an extended period or a short period of time.”