Share your experiences of working for our blog

Share your experiences of working for our blog

We'll be continuing to share people's lupus stories for May and June. We'd now like people to share their stories about working and any challenges this created. You may want to tell us about your experiences of telling your employers about your condition, any adjustments you may have received in the workplace that you found helpful, or perhaps, how your colleagues responded to the information. If you'd like to share your story, please email it to

We'll aim to share one or two stories a month (depending on how many we receive). Please send a photo of yourself along with your story.

2 Replies

I kept it from my boss when I was working, for fear of being treated differently. I ended up quitting and started my own business. I had loads of business but did have to stop due to fatigue and pain. Now on disability & social security.


I work in a GP practice and I have kept the manager informed of the diagnosis's and how I am feeling. We have had 3 managers since i started. After my initial long spell off they linked with a hospital occ health and I saw a doctor there re my return. For some time I remained at 16 hours. I was supposed to have plenty break times etc. The practice manager and partners have been very understanding but unfortunately everyone has had to change in the way they work in the practice to cope with the extra work required. This coincided with me thinking I was fit enough to go to 30 hours again.

I have been at 30 hours since nov/dec time and I've slowly struggled more and more. I informed one of the partners on Thursday that I was struggling too much and that I needed to reduce my hours. Both the manager and the partner made time to have a quick meeting and discuss what I wanted to try and if there was anything they could do or adapt.

I have dropped a day. It is temporary for now, at my request, to see if I can pull around once the Methotrexate starts taking effect. I am quite low about it but over the weekend I am realising I already feel better in my mood due to less pressure to be fit for work.

At the beginning of the meeting I was reassured that my job was safe and that I was a valued member of the team. It's what you need to hear when you feel so vulnerable and don't really want to lower your hours and wouldn't be doing so if you where fit. If I don't take this step I will end up off sick, so it works for both side but its taking some coming to terms with.

So I feel very lucky. I hadn't even given them my leaflet on lupus and working. That has gone to friend, just starting her role as deputy head so she can help a colleague who she thinks has Lupus. Hopefully she will be as caring as my bosses.


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