I have recently been diagnosed with SLE and the specialist has started me on Hydroxychloroquine, since I had my appointment I have had to tell work and the university about my diagnosis. I work full time and study part time (sponsored by my company) to complete my degree.
I am feeling confused now because my work want to refer me to their occupational health who are an independent company to assess/look at ways to help me - has anyone else had experiences with occupational health at work?
The university has a student support section and I emailed them about my progress issues stating I have an autoimmune disease which when it flares I struggle to attend work or do anything for my degree. I have scheduled a call with the student support service for this Friday but I have no idea what to talk about to them. The whole thing is stressing me out as I haven't come to terms with my diagnosis yet now others want to know about it too... just feeling very overwhelmed at the moment
Anything anyone else has done after their diagnosis to educate others on lupus would be a huge help! I know my situation of work and studying is unique so any advice is greatly appreciated
Thank you,
Leenie x
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Leenie0811
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Yes, the purpose of Occupational Health is to determine what reasonable adjustments need to be made for you at work. These can cover many adjustments to allow you to be productive. I’m not sure about the student support service, but I do know of uni students with adjustments.
It’s all covered through the Disability Discrimination Act.
I suggest, to start with, you explain what you find might be particularly helpful and take it from there. This forum has a number of information leaflets if those involved are unfamiliar with lupus. What’s important is how it affects you.
My mum said to me there would be some kind of legislation that covers work and I found it really overwhelming to read over but I think this weekend providing I keep feeling okay - the last month or so I have spent my weekends sleeping to catch up from the week at work.
I work a 42 hour week at work in an office which is okay but I don't appear to have any flexibility on my hours as I support the construction teams. I think maybe asking for flexible working could help as I know some days I have to drag myself to work and it's probably dangerous for me to drive in that state.
I've been so worried about my absences that I feel like I cannot take a days leave at the moment until I get the days down a bit.
The university said they can provide me with examples of what they do to help other students so I think that will help me see what kind of options are there. I will check out the information leaflets from Lupus UK too.
Lots to take in & to try & convey to others what you may need.. Lupus UK as Lupi mentions have great leaflets relating to a wide variety of issues including work....I found it helpful in these meetings.
What I would say about your educational work is I spoke to a Disabilities group to get feedback about 'reasonable' adjustments & understanding what can be done to support you.
For me extra time - maybe exams (slower days to process & write), more time to submit work or more assistance or other kinds of support... The uni will know as there is a wide & varied number of students that need extra support.
I found it easier for example, to type my exam, then write it by hand, as I compose better & quicker..
Give is some thought....another example is being able to come into work a little later, which allows me a slower start in yhe morning & able to miss commute travel time too....
That is exactly how I have been feeling it has taken it out of me trying to understand and get others to understand how it all affects me. My mum has her own health issues so it sometimes helps talking to her but then again other days it is like we are in competition as she tries to go one worse than me when I just want her to listen
I hope when student support speak to me their examples resonate with me, I find when I have had a challenging day at work it leaves no time for studying at home so I usually do my uni work on the weekends. I will only ever do one module at a time as I know flitting between two would just confuse me! This module requires 10 hours a week study time - I do it part time to coincide with my job.
I am thinking the extra time would help me and I already type my notes now for my studies into an online notebook. I have one exam at the end of the year which will require me to travel to - I study with the open university so I will probably have to travel the night before to make sure I have a stress free morning.
Thank you for your tips, it really has helped me out
Understand perfectly & I find travelling the day before much better than rushing the day of an exam etc. My daughter taught me to use flash cards which really helped my foggy brain & there was no criteria in amount of extra time so I asked for 50% more to process & type answers with a break between 1st & 2nd half & I was monitored throughout & they provided me a computer for the exam....
Do ask what kind of help their is....
You should be very proud of yourself for managing so much...I am working on my own compassionate speak to my self...
Also, my daughter & I give each other lots of cuddles. (she's in uni) & it is hard to walk in each others shoes... & when you are both in pain.. Off to work will send you a link later that I finding interesting may help....
Sorry it has taken so long to reply, I have had so much on with moving jobs and uni deadlines! I got in touch with student support and they have been so helpful, my assignment got extended so I could catch up on work and they are considering extending the second one so there isn't as much of a time pressure near February x
I was petrified when work referred me after my diagnosis as I’ve had some time off sick and am off again after two operations. HR and occupational health have been fantastic! Occupational health make recommendations in regards to how work can support you. Your work has a duty of care to make reasonable adjustments to working pattern, times, duties. Mine have all been accommodated so I know I’m very lucky. So I really wouldn’t worry too much they are there to help you. xx
An Occupational Therapist can help with: joint care, ergonomic advice (advice on the interaction between people and equipment), advice on gadgets and splints. They can also carry out workplace assessments to see what will enable you to work more comfortably. Some lupus patients have benefited from having an occupational therapist carry out a workplace assessment, you can learn more about this in our blog article on lupus and work - lupusuk.org.uk/lupus-and-work/
We published two booklets on lupus and employment; one booklet is for employees and the other is for employers. The booklets discuss your rights and support services available to you. Download the booklets at lupusuk.org.uk/working-with....
To learn about adjustments that can be made for students with lupus, read our blog article on lupus and education at lupusuk.org.uk/studying-wit...
Sometimes certain situations can be tough which is why talking to someone can help reduce any worries or anxiety you may have. If you would like someone to speak to, we can provide you with LUPUS UK contacts who you can chat with over the telephone. These contacts are volunteers who mostly have lupus themselves; they are not medically trained but are there to offer support and understanding. If you would like a contact to speak to, you can request details of your local Contact at lupusuk.org.uk/contacts/
We recently published a blog post from Elizabeth McInnes discussing university and lupus which you may find interesting to read at lupusuk.org.uk/university-a...
Please let us know how you get on, wishing you all the best.
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