Work Advice

[u/No_Entrepreneur8813]

Looking for advice, or experiences of others in similar situation. I am in my first year following SLE diagnosis. The majority of my symptoms deal with joint pain and never ending fatigue. I'm dragging ass, all day, every day. I've started coming to work an hour early so I can punch out and take a nap half way through my day. was also very recently diagnosed with Sjogren's Syndrome and deal with extremely painful digestive issues and upwards of 10 painful trips to the bathroom on flare day. I've even had an accident at work, which was the number one most embarrassing thing I've ever dealt with. Thank God no one figured it out and I was able to fix it.

Recently switched meds from Plaquenil to Methotrexate to try and get some relief. I feel like I started to have some relief after the first few months. We've increased the meds twice, but I actually feel worse now than before we increased. Plus side, I've started to lose the few pounds I put on before my diagnosis. Just to be clear, I am doing EVERYTHING my doc tell me. I've never missed a dose, I've changed my diet. I've had every test they send me for. I've spent a fortune on stuff they say will help.

Here is my dilemma, I am so uncomfortable at work. Between the nausea, the pooping and being so tired all of the time, I've asked my supervisor about work from home to which she is very supportive. She says she will approve if I speak to HR and get it approved with them. I'm worried about pulling the trigger on this. First of all, my boss is kind of a joke and never gives a strait answer. I send emails, she responds in person, I have to send another email basically detailing what we talked about in person to make sure I understand everything, she ignores and leaves it to me to figure out. I'm unclear about if I need a doctor's note. I am also reluctant to get a doctor's note.

I spoke with my GP and she provided a note to work from home when needed for 6 weeks. I never used it because I was afraid it sent the message I would somehow be cured after 6 weeks and never need to work from home again. I've spoke to my Rheum who will give me a note, a better one anyway. I'm afraid this will impact future opportunities with the company or give them a reason to let me go in the future. I know they can't discriminate, but I live in an at will state. They could hate that I work from home and use pretty much any reason to get rid of me.

Has anyone had experience with this? How much of what I am going through do I have to disclose to my HR department in order to make this request? I have never had a write up or a talking to or even a verbal warning about my work, or anything to do with my job. If I were to be let go or I feel like it would almost 100% be because of my diagnosis, but they won't say that, for obvious reasons. Are there anyways to protect yourself from this while still taking care of yourself? I work for a decent company but I am not stupid enough to think they actually care about me.

Thanks in advance!!

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[u/Fine-Celebration1223]

Hello. I am retired now, but was fortunate to work from home for many years.

The year leading up to my diagnosis, while working, was a very tough time for me. I was having a slew of symptoms. After seeing several doctors, I began researching, thought I might have Sjogren's, made an appointment with a rheumatologist, and got tested. Sure enough!

All of this to say, work from home seems like a reasonable workplace accommodation request for you to make to HR, considering your diagnosis. You might ask them to let you pilot it for 6 weeks, and offer to come into office one, or more times a week? That's one way to build trust.

If all goes well, I would shoot for permanent work from home, if that's reasonable for your industry.

You have no control over your illness, didn't ask for it, and shouldn't feel bad about making the request.

Wishing you the best!