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Managing Lupus and Work -- Is Disability an Option?
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Christine Miserandino posted:
To work, or not to work: that is the question.

Lupus is a disease of flares and remissions, which makes it very difficult to get and keep a job. Problems and issues related to managing work are a familiar story I often hear from other lupus patients.

Along with others, I have struggled with the circumstances of working and having lupus. It often seems like a never-ending cycle. We need to work to make money and to survive. We work for our careers, our passions, and even our identities.

But then at some point, our lupus symptoms seem to get in the way. Exhaustion stops us from getting to work on time or staying a full day. Memory loss or pain can interfere with effectively doing our jobs. If lupus affects our organs, then work is sometimes completely impossible.

For many people living with lupus, working and living a "normal" life is a possibility. For those who have problems with a regular work environment, or can't work, deciding the next steps to take can be overwhelming. Can your employer make reasonable accommodations to help you stay at your job? Can you telecommute, work part-time, or take on different responsibilities? Is it time to apply for disability benefits?

All of these questions can only be answered on an individual basis. There is no single set of answers that can apply to every person and the specific lupus challenges they face, their finances, or work situation.

We can help each other by talking about actions we have taken in similar situations. We can share what it's like to be on disability, or what changes we make to be able to continue working. Let's share our experiences, advice and support on the difficult work or disability choices so many of us living with lupus must often make.

How has lupus affected your ability to get hired or maintain a job? Do you have suggestions for others who face the challenges of a career or the prospect of applying for disability benefits? Tell others in the lupus community your strategies to cope with work-related issues.
- Christine Miserandino
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cheryllec responded:
I completely identify with the frustrations of having
lupus and dealing with the physical and psychological effects of this illness. I recently and relunctently deided to apply for disability after a flare that caused me to be hospitilized three times in one year. In this economy its obvious we need to work and life goes on. I felt really defeated at first because we all know how difficult it is to get disability, Secondly i enjoy working and try to maintain a normal existence when i feel well enough to get up and do things on a daily basis, i take full advantage. I had to be honest with my self and realize that i needed to relieve the pressure of trying to drag myself to work and performing at less than 100%. The days i could not function would mean calling out. It would only be a matter of time before the sick days would be gone and i would loose my job. All these things became quite depressing to think of so i decided to think of alternatives. I have decided that i will apply for disability, Take complete care of my health. I even decided to write a book in my down time. The book is very therapeutic. The point is to focus only on something that brings you peace. I use this time as a much needed vacation and im feeling so much better without the pressure of having to worry about working through sickness. I plan to work part time once Disability is approved. Depression is not an option right now. I have to fight this disease . Try to stay focused on getting as healthy as possible and the rest will fall into place
 
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lisaisweavebee responded:
I struggle with this very topic every day. Not knowing what to do is stressful in itself! I started a wedding cake business before I was diagnosised and was able to build a very good business (around 70 weddings/year) out of my home. I made good money with low over head and enjoyed my job.

Then came lupus... while I am very fortunate to not have major organ involvement, I struggle with joint pain/fatigue/memory problems. I never know when I go to bed at night if I'm going to wake up well or sick. The problem with having a wedding cake business is you HAVE to deliver on a set day at a set time. There is no "i'm sick today - can I reschedule crap". That alone puts a lot of stress on me worrying that I will be sick on the "big day". I can not tell you the number of times I have been laying in a emergency room on a Friday night, vomitting none stop, electrolyte troubles, migraines and whatever, but trying to convience the ER doc to send me home as I have to finish the cake and deliver the next day. The old "zofran, morphine, electrolyte" gig is getting old.

Problem is - from what I've read - joint pain, fatigue and other issues are not grounds to file for disability. I am self employed and my medical insurance is through my husband so there is no "medical disability" that I qualify for. I have watched my business shrink from 70 weddings to less than 20 weddings and am now considering closing. However, I need to have some income - if for nothing else but to pay for medical bills.

Any one with any ideas on what I can do?

Lisa
 
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pensivepurplebutterfly responded:
I was just diagnosed 2years ago. Lately with the fatigue and nausea from medications sometimes my work performance is affected. I am graduating from college and having a part-time job is definitely needed so i have deal with pain, fatigue, and headaches throughout the day. I hope to get better and continue with my master's degree so i can pursue my career in the work field.
 
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Elizabeth_WebMD_Staff responded:
Great topic - I can offer a different point of view, from the employer.

When I worked in healthcare administration I had an employee with Lupus. I never questioned her calling in sick or leaving work early. Sometimes she just couldn't get out of bed in the morning and it would take her a few hours to get moving. When she felt decent she gave 110%. She would always come in early or stay late to catch up on things after an absence. She was empathic with patients, understanding complaints of aches and pains.

I understand that all business can not function when an employee has frequent absences, but I think being upfront and honest with an employer or potential employers will allow more leniency, flexibility. I know, easier said than done in this economy!

I should also add, other employees did complain about things being "not fair". This was difficult to deal with especially when a written "Office Policy" is followed.

Elizabeth
 
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OneinCalif responded:
I was diagnosed with SLE in 1988. I have worked full time since 1972, and continue to do so. Through all this there have been major and minor flares. My main complication involves my kidneys. I really have kept my condition quiet to all but a few trusted co-workers [in the event a flare occurs at work> because the administration doesn't know how to deal with chronic illness and would demote me - I've seen them do it to others. I use my energy stores for work first, and what might be left is for me. When possible I turn off florescent lights, I exercise in the mornings, I have tinted windows on my car, keep my health as good as I can. I am single and my health insurance is all I have.

Over the years I have learned the signs to know when to take a break, and do not hesitate to do so. You have to be proactive in keeping yourself as well as possible. If you make plans but have to modify or change them, then do so.

I would not qualify for disability with the stage I am at.
 
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MaryConcordNC responded:
I've struggled with symptoms and flares for 2.5 years with "reactive arthritis" until the diagnosis came in with Lupus. My job kept me on the road for long stretches out on Sunday, back on Thursday. My assignments are usually very stressful, and I have to balance this with leading a team of 25-50 consultants in our practice. I work 50-80 hour work weeks. Last summer it became too much (stress plays a big factor in SLE) and my rheumatologist and I decided that a short-term disability was in order. This helped, but I continued to struggle thru a flare, and talked to my boss about stepping down, and taking a lower-level more administrative job that wouldn't require travel. He has worked with me to keep me in my job and restructure my duties to reduce the travel. Nevertheless, I know that a day may come when I can't do it. For this reason, we need to prepare for the future. I have purchased long-term disability coverage from my firm (did this from the beginning, before I was sick). My company has also offered long-term care insurance with open enrollment periods. Luckily I took advantage of this when it was last offered, and it coincided with the onset of my first symptoms. So I feel I have options, and this in itself relieves some of the stress. I'm open in discussing the disease with trusted members of my firm, so they will understand if I have to excuse myself at times from working too late, or if they see me with a new wig because of hair loss from methotrexate. I have found everyone to be very understanding and supportive.


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