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Patients Lupus

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Topic of the discussion

Member Carenity
Posted on

Hi everyone,

I know each person's experience with lupus is different, but as one with lupus who still works - I am lucky to work from home - Working from home, I still have to take breaks often, but I am worried that I may not have this job for much longer, so I am curious to learn about others.

How many of you here work and what type of work do you do?

How does it affect your work? 

Or how long were you working before you decided you could no longer, and what was the last straw?

Thank you all.

Beginning of the discussion - 2/22/19

Lupus and maintaining employment
Member Carenity
Posted on

Hi @Hidden username‍ I work in an office for an insurance company. You know your body best, and know what jobs would be best for your condition, if you are able to be selective with your job selection. For me, a job that has less stress is best and that is why I am now doing the work I do.

Lupus and maintaining employment
Member Carenity
Posted on

@Hidden username‍ each person is affected by lupus to different degrees and severity. Don't fall into the trap of comparing your ability to others or theirs to you. Only you know what your body can and cannot do and how far you are able to push it without it sending you into an intense flare. Many people do work with lupus and manage it well with certain accommodations, while others don't.

Another important thing to consider is the amount of accommodations certain jobs give to employees. Some jobs are a lot more understanding of accommodations needed for those with chronic conditions, such as lupus, and thus this affects the ability also of some to work and others to not.

Lupus and maintaining employment
1

Member Carenity
Posted on

I had to quit my full time job to choose a part-time job that I can work at home. You know, lupus causes many symptoms which can come randomly. Fatigue, joint pain, and headaches prevent me from handling tasks in the right time, which has an impact on work performance. Then, I must to decide to quit my job, it's difficult choice for me at that time. But everything is better now, I can control my lupus symptoms and don't let it to affect my part-time job. If you can control your lupus symptoms, it's better to keep working 

Lupus and maintaining employment
1

Member Carenity
Posted on

Hi eleanor what kind of part time work did you find to do at home ?  I too had to leave a job I loved because of my lupus   thank you

Lupus and maintaining employment
Member Carenity
Posted on

I was a bus driver  and had to leave the job. Because of stiffness in joints and  focus  and drousy ness   .    I couldn't straighten  my position from sitting to standing. After work. Took .long while

Lupus and maintaining employment
Member Carenity
Posted on

Mamamia. I feel just like you regarding work !!!!

Lupus and maintaining employment
Member Carenity
Posted on

I’m in the process of quitting my job I need something part time and maybe at home. I’m 21 and sadly right now working is just to much on my mind and body and I don’t know what to do.

Lupus and maintaining employment
Member Carenity
Posted on

Hi my name is Becki. I have lupus and still work. I work at a personal care home. I take care of 62 residents with mental health issues. Most of the week I do laundry, but on the weekends I am the lead med tech, and do anything else they need. I usually have to walk over 7,000 steps in a day.  My back, legs, knees, and most other joints hurt. Some nights I don't even know how I make it home, but with everyday I see that these people do not gave a very good support system, so I stay. I take my meds, but they really don't help on my long days. 14 hrs every Sat and Sun. I just hope I can make it a few more years!!!

Lupus and maintaining employment
Member Carenity • Community manager
Posted on

@Hidden username‍ wow! That seems like a lot of work for anyone! 14 hours between Saturday and Sunday or each day? 

Are the weekdays challenging also or not compared to the weekends? In addition to the pain experienced in the joints, does lupus affect any other aspect of your work? Do you experience fatigue?

I admire your strength.