A community of 30,000 US Transcriptionist serving Medical Transcription Industry

Lupus and working - wondering

Posted: Aug 15, 2011

I work for an amazing company, really like my job and have been with this company for over 4 years.

I was recently diagnosed (last week) with lupus (SLE) and it's really impacting my job performance. It's been noticed also by my employer and I'm wondering if I should tell them that I have lupus. There are some days where I cannot remember the account specifics, my entire body is in a huge amount of pain and I'm continually exhausted.

I realize it's not fair for my company to have to deal with my issues right now, but I really can't afford to lose my job.

Thank you for your input!

Wondering - Alice Blue Gown

[ In Reply To ..]
I am also disabled. Here is some advice, for what it is worth. Please consult an attorney who specializes in ADA (Americans with Diabilities Act)issues before doing anything. Or I do not know if you live in a large city (I do) and we have a Law Center for the Disabled. They can advise you how to proceed. It is important that you keep copies of all correspondence between you and your employer and a log of all phone calls. I believe that there is a national organization for people with SLE; you might call them and see if someone in their legal department can help you. The company does have to make "reasonable accommodation" for you. I am sorry you have this challenge, and I wish you all the best.

I would wait see message - Me

[ In Reply To ..]
I feel for you as I have been through something similar though not SLE. I was diagnosed with hypermobility joint syndrome, fibromyalgia, and myofascial pain syndrome. I have a collagen deficiency that's causing joint degeneration, disk degeneration in my spine, and I suffer from the pain of fibromyalgia on top of the body system issues.

When I was first diagnosed, I worked for a "great" company too. One that I thought I could trust to work with me as I had been a loyal employee for almost 5 years.

I found out the hard way that when it comes to long-term illnesses, there's no loyalty from companies. When I told my manager about my illness, I was "laid off" 1-1/2 weeks later. No write ups regarding performances, 99.7% quality on annual and monthly audit reviews!

You need to protect yourself at all cost! Get your physicians involved, ADA if applicable, FMLA if your employer offers it. I have been there. Email me if questions.

Rest - Rest Rest

[ In Reply To ..]
I have found that to keep performance up when you have this affliction, it is necessary that you rest. That means no strenuous activity. I recall the time I cleaned my house thoroughly over a several hour period and actually needed to take 2 days off afterwards. Also, you have to keep your mind clear of stress at all costs to focus on this kind of work which requires attention to fine detail.

So, if you want to continue working, my suggestion to you is - begin to accept that fact that you need solid sleep patterns, that your days off should be in the supine position. Going for a walk helps but strenuous exercise can deplete energy reserves - My theory is our bodies are expending energy to deal with the SLE and we are limited.

When I worked in the hospital, I literally slept all weekended, soundly. After 2 days of sleep, I was ready to go again for another 5 days. Some times are worse than others (flare) but you must rest. Hire a cleaning lady or incorporate your family to help you clean. If you do clean, do it in segments. It may not seem strenuous until later - but that is how I am doing this.

Stress is hard to get away from in today's world - so try to cut that back - allows us to read and hear what we need to without that "fuzzy brain" feeling. Coffee helps me wake up. I steal awy from my desk and sleep when I get too groggy. Even for 15 minutes; it helps tremendously.

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