Newly diagnosed and stuggling at work

[RioR70]

Hi guys, this form is amazing! I got diagnosed a month ago after a long time of thinking it was all in my head. I have just started hydroxychloroquine and the side effects are fun 🤯! I have quite a stressful job and wonder if anyone has any tips they can share with me, as its that classic case of " you dont look sick, maybe go to bed earlier". Thanks again and I'm so grateful for being able to read othr peoples experiences 💜

[Spanielmadlady]

Hi .I'm unable to work now but instead get you dont look Ill why do you work. Anyway do you have the hidden disabilities lanyard and lupus card that you can wear and hopefully quietly educate others.its important to keep stress under control as it will fuel your illness so can you change your job within your work place or alter hours.might be worth talking to your employer. To manage your illness effectively you've got to put yourself first . ...only you can do that no one else will especially employers.

Dont forget hydroxchloroquine can cause photo sensitivity so cover up in clothes ,hats and sun screen.yearly eye tests as well.be patient hydroxchloroquine takes several months to start to work..good luck

[RioR70 in reply to Spanielmadlady]

Thank you so much for the advice and definitely agree i need to make some changes to manage this. I will look to get the lanyards as read about them yesterday.

Take care and thanks again x

[Spanielmadlady in reply to RioR70]

I know you had a difficult time getting a handle on all of this but it is manageable if you are prepared to adapt and acknowledge your limits.i hope now you've had chance to process things you feel more able to cope best wishes big hug xx

[DJK99]

Hi RiorR70- so sorry you are going through this - I went through it for years not knowing what was wrong with me and especially when I moved up a huge jump into the most stressful and risky role in Social Care. It knocked me for six, and continued to until I just had to retire on ill health grounds as couldn't do the job properly/was off sick all the time in the end. Before retiring I asked my Rheumy to assist and he wrote a great letter to my manager etc explaining the condition, how it affects me, and asking if I could be able to work from home as much as possible. It was extremely helpful, so ask yours maybe. The first thing you could do now is read Lupus UK's amazingly helpful info on all this... how you can talk to work etc, and how work must look after you due to Lupus being a condition under Equal Opps Act or whatever. Here is the link to the lupus info... it's lengthy but essential reading - and you can pass it on to your manager too. Part of it is to ask for a referral to Occupational Health (if you company has that) and they will assist the whole situation hopefully. lupusuk.org.uk/working-with... . Make sure you drink water all day too... and have little breaks... very important. Good luck and hope you get all the support you need. All the best D x

[RioR70 in reply to DJK99]

Hi D, hope your enjoying your sunday! Thank you for taking time to reply to me. Thats exactly what i need to do explain to my manager the impact that it has on me and ask for an occ health assessment. I am currently working from home but the plan is to start going back into the office in September, but i will ask for more days at home than in the office. Thank you for the link i will read that now. Hope all is ok with you. X

[heatherevans28]

Welcome. I'm so glad you've started hydroxychloroquine as it's by far the safest and most effective drug for managing mild lupus. It also has the fewest side effects though they may take a few months to settle initially (and for the positive effects to kick in).

In terms of work, I would talk to your manager and see if there's an occupational health referral system. Alternatively your rheumatoligy consultant can refer you to an OT who can make recommendations for changes you need in your work and home life. Lots of little changes can make all the difference, but its hard to recommend without knowing what type of work you do or what you are struggling with.

I worked in a busy office when I was diagnosed but they let me use the lift, made sure I could move every 20 minutes (not locking my joints) and flexible working for appointments or bad mornings. These are just examples but there are lots of small changes that can really make all the difference. I ended up reducing to 4 days after some serious flares made a 5 day pattern really tough, but I worked more hours on those days. It meant I then had a day to do bits around the house and could enjoy my weekends.

I would also look at things you can change at home to see the whole picture. Bulk batch cooking for example can really take the strain off midweek meals after a long day at work. It all depends what symptoms you are mainly suffering with as lupus affects people in different ways and to varying degrees. The majority work and live independently, with their disease well controlled.

All the best xx

[RioR70 in reply to heatherevans28]

Hi, thank you for the advice. I work in an office aswell and definitely think i would benefit from dropping a day as by the time the weekend comes i am too tired to do anything. I will take your advice about see an occ health.

Hope your have a good week so far xx

[SurferGuy]

When I was first diagnosed I dropped a day and that made a massive difference. Please do speak to your manager about this. Also, maybe send them a link to Lupus info. And as suggested above, definitely get an occupational health assessment done asap. This way, your manager has to implement reasonable adjustments recommended to them by the OH nurse.

And rest rest rest whenever you need to and can. It makes such a massive difference.

[RioR70 in reply to SurferGuy]

Hey, that is what I'm thinking would be a good idea but my company are not very keen on things like this.

I am taking that advice and have today and tomorrow off as holiday as i I nervously await my son getting his gcse results!

Thanks again for your reply

[SurferGuy]

Keen or not, under the disability act, they are obliged to take necessary action to look after your well being. I fully appreciate this could make things difficult for you, but your health must come first. I've been in a similar situation as you before where I've felt as though I've been putting additional pressure on others due to my condition. But in the end I had to weigh up my health as apposed to my manager having to take on the responsibility of making adjustments for me.

If you need any further advice, please do let me know.

[RioR70 in reply to SurferGuy]

Thank you. You are right. Think about me and not others