Fellow Lupies that are still able to work full time....
How do you deal with he guilt that come from taking sick days due to your Lupus? Before my diagnosis I hated taking days off and would only do it when I had a severe cold or the flu. But now there are days that I can barely move due to swelling, pain, or fatigue. A few co-workers comment about how I'm gone a lot (still with my allotted sick/vacation days) even though a few of them already know about my Lupus.
FMLA is needed to protect your job with Liupus or any chronic illness for sure. Unfortunately, guilt remains NO MATTER how supportive everyone is, no matter if you know others call in for so much less and they are the very ones who complain! Etc etc. BUT with FMLA (if NOT abused) it allows you to recover and be able to function and still be a productive human being. NO they won’t understand always. They will try to be compassionate, but until any of them suffer the exact way you or I do with this illness and have to deal with the scary things and stress and guilt it carries, they just won’t understand fully the burden we have to carry. What I have tried to do is not worry so much and most of the times I do have to call in I don’t worry or feel guilty anymore. It doesn’t eat at me like it used to because I realize none of my co workers have to do the suffering for me. They get to go on vacation. They get to hold their children or grandchildren with no issues. They get to go out into the sunshine and not worry or prepare ten minutes with lotions and long clothes. They don’t have to take immunosupressents or chemo or infusions that COULD possibly kill them with one exposure to an infection not to mention the nasty side effects. They don’t have to pray their kidneys don’t shut down everyday or the inflammation doesn’t cause heart damage or vascular damage or joint damage so bad that they have to have them replaced. They get to live normally. So being inconvenienced a few days here and there is NO comparison to what we have to endure and all I have to say to those who would complain about it is, “ I am so very sorry my incurable illness that at best my doctors can just slow the progression down on and keep me comfortable is such an inconvenience to you”.
I'm disabled now, but worked for a large enough company that they made ADA accommodations and had FMLA. I kept in touch with the HR disability manager and my director. They adjusted my schedule several times including letting me work less than 40 hours but enough hours so I didn't lose my full time benefits. Eventually I went to a 4 day work week with Wednesday off to rest. They also changed my desk to a sit stand desk so that I could stand part of the time to help with circulation since I'd already had a blood clot in each leg and a pulmonary embolism in my rt lung. They also had several private rooms with cots so folks like me could rest during their break or if having a hard time. I worked really hard to climb to where I was in the organization and was well known in the upper part of the organization. I absolutely hated having to go out on disability but I was suicidal at the end. I had almost exhausted all 12 weeks of my FMLA, couldn't keep up with deadlines, had a horrible time trying to get and/or stay at work and then had no quality or personal life. I spent the majority of my off time in bed exhausted and sleeping trying to let my body catch up. The HR disability manager finally recommended that I go on long term disability and see if I could recover enough to come back within the 1 yr allowed b4 they replaced me. I was never able to go back. Unfortunately my health has continued to decline. Seems like there's been a new diagnosis added every time I turn around. I fought for 5 years to finally get Social Security to approve me. Ended up having to go in front of an administrative judge. He was the first in the organization to recognize that my situation needed to be evaluated as a whole not just the primary diagnosis. Once I got to him I was approved on the spot within 20 minutes! It's very hard to be your own advocate when you already feel so bad and are struggling, but you are your best advocate and have to fight for yourself. Thanks to all for reading my diatribe and especially for being a part of this community. I felt so alone b4 I all of you...
I had to give up working. I couldnt do it anymore. The stress that i was putting on my body forcing myself to get up everyday and work long hours was causing more harm then good. I can say that i kept going trying to ignore my flares worrying about what my job would say. I could barely make it home and fall out to start again the next day. One day i woke up and couldnt get get up or walk. That was the end of me working. Your health comes first.
It's a shame at the lack of compassion we have to deal with at work. Lupus is not a figment of imagination. The pain, the fatigue, the burden. It has a mind of its own, and we become the masters of hiding the pain and pushing through until our body gives out. It's nothing to feel guilty about. It's our journey, not theirs, and the only approval I need is from my Lord & Savior.
I was a nurse at one hospital for 16 yrs. Had seniority and was trusted and got along well with everyone. I was a strong nurse. I loved being a nurse. It became so difficult. Besides being afraid of getting an infection due to immunosuppressants, the physical demands of being a nurse became unbearable. I left my position after 16 yr for a job that was just 8 hr shifts instead of my 12 hr shifts. I thought that would be the answer and end my struggle. That was not the case. I still have terrible pain and fatigue. I am now on medical leave that will end in me resigning as medically I am worse. Fatigue and brain fog worse. Cannot be responsible for caring for patients. My point; being in denial caused me to walk away from a long time career thinking a change in venue would alleviate my pain. I am now trying to figure out what to do. I have been a nurse for 23 yrs. That is so much of who I am and that is gone. Who am I at age 44. I do not know how to take care of myself. I feel terrible guilt for not being able to financially provide for my family and for being on medical leave from a position I have had for only 2 yrs. I know I have to take care of myself and it is hard to accept the truth of this diagnosis.
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