How do you manage with work?: I’ve just joined the... - LUPUS UK


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How do you manage with work?

Mumof2andadog profile image

I’ve just joined the group, I have MCTD (diagnosed 2 years ago) and work 4 days a week.I had the dreaded conversation at work today where my boss told me he had noticed that I’ve not been up to my previous standard over the past 6 months or more, sometimes when I’m asked questions my eyes glaze over and in his words “look like a rabbit in the headlights” and am not taking on / coping with my work as well as he’d like. He knows that I have MCTD, without knowing much about it.

He was partly sympathetic and asked what the company could do to help me, but I found it very hard when he asked what could be done to improve my health - my understanding is that the brain fog and exhaustion are just part of it and aren’t likely to disappear.

Has anyone had a similar situation - how do you manage at work when you’re not able to perform to your previous standard? I appreciate from the employers’ point of view that it’s not fair to them to have underperforming staff, but equally there’s not a lot I can do as I am trying my best and I need the job!!

Any advice welcomed!

14 Replies

Hi Mumof2... I have no advice, just love and support. Your situation is a tough one but I’m sure others here are going through the same and can advise? Is there another post at work they can switch you to? One less stressful? Answering phones, taking messages? Idk. Something they could retrain you for if necessary?

Best of luck, BK

Mumof2andadog profile image
Mumof2andadog in reply to

Thanks so much, I really appreciate the support.

Thanks so much, that’s a good idea - I will get together various information and give to my boss and HR Manager.

It’s so nice that people here understand - I spoke to my husband on the phone afterwards and he is supportive but doesn’t accept that my brain is struggling because of MCTD, he is adamant that it’s just because it’s a boring job 🤣Sometimes you just want someone to relate don’t you!

Ask for referral to access for work as they can support how you work. I made my work organise occupational health assessment to give them understanding of what I can can’t do. He may see the glaze as you struggling or not understanding rather than a symptom that you can’t control. You could process that information at another time. Your illness prevents it at that time.

There are legal parameters that protect you. Use them to your advantage.

I am sorry to read your post. My research has shown that your local Citizens Advice Bureau is a good place to start and can prove very helpful if you phone them and explain your situation.....wishing you the very best, Lily

I have mctd too. One of the things that helped the brain fog was adding Liothyronine to my regular levotyroxine routine. It is another form of thyroid hormone that helps with cognition. I also have hypothyroidism so that was added by my endocrinologist. I also take a nap after lunch for 1h and then continue afterwards. You can ask your boss if you could take a 1h brake and you will function better after the rest. I have been doing this for years. Other things that help cognition is coffee, just need to take it at the exact same time otherwise I get a headache. Does your work allow any work from home? I often go home take rest and finish my work in the evening if im not able to concentrate due to fatigue.

Really difficult but you do have rights under equality act which mean that you can access support to help you to be able to work effectively eg just as a wheelchair can help someone with mobility problems so flexibility, breaks, different working patterns may help you. You have the right to have that support. As above try occ health (and if not experienced withMCTD try getting independent though private consultation as may be low level help otherwise)CAB, but see if possible to find vocational rehab specialist.. they negotiate with employer as well. Also outside work not mentioning to workplace could discuss with career counsellor if other sort of work may help /be better for you. Good luck

Could google (Booth et al 2018 and lupus) and a paper comes up on survey of people with lupus at work

Thanks so much, I have no experience with dealing with any of these areas so I have no idea what help there might be or how I could look to improve things. I will look into all this.

I thought I might see my GP as well, perhaps if I make it clear that the condition is now having an effect on my ability to work as well as I have been able to before, they may be able to fast forward my next rheumatology appointment or there may be something else they can try.

Thanks for the support!

That must be so difficult for you. I'm in the fortunate position that I've been self-employed as a business consultant and work from home for the last 12 years but I to have had problems recently because of the extreme exhaustion I've been feeling this past year. I tend to keep my health issues to myself but have found that it's better to be completely honest with the people I work with and they have been totally supportive. As I charge them an hourly rate, they simply pay me for what I do and they're happy for me to work when I'm well enough to do so.

I know I'm very lucky to be in a position to be so flexible around work but wonder if you have any skills that you could provide in a more flexible way. Having said that, I appreciate that sounds like a very simplistic response to your problem and if you rely on your salary then I'm probably not being very helpful. If you're not in a position where you can 'jump ship' as I did, I think your best solution would be to provide your boss with information about your condition that he will understand and tell him that when he's read it, you'd be more than happy to answer any questions he may have.

Also, I'm a great believer in providing an alternative solution to the problem. For example, because of your health issues you may not be in a position to do ………….., but you would be happy to …………. I've found that if you can offer a potential solution to a problem, you've a better chance of getting what you need. Please let me know how it goes.

Thanks so much, it is really interesting to hear other people’s experiences and get some new ideas as I have no experience of being in this situation.

My boss has told me today that he has spoken to HR, who are going to produce a letter to send to my consultant to request a report on my health and what the company could do to assist. Whilst I welcome any involvement, I’m slightly unsure of how helpful this will be as I see my consultant for 10 mins twice a year and he always seems quite dismissive as to any problems I may be experiencing! At least this will highlight that it is affecting my working life, so I am probably deteriorating.

I do need the job, and probably best to stay where I am rather than look for a new one as at least they are bound to help rather than a new employer who may not be understanding. I wonder whether requesting to work from home sometimes might also be helpful as then I can move around when I’m in pain and will have less rushing around to do each day.

If you can do your work from home that is fantastic. I definitely feel better when working from home. Although you might think it's no big deal, you do incur some stress while commuting so eliminating just that and relaxing instead will save loads of energy for you.

Hi, your suggestion certainly sound feasible to me if your employer well permit it, and that may depend on the job you do. I work as a business consultant so if you let me know what your employment is I might be able to offer some suggestions on how your situation can be managed. If I can do anything to help please let me know.

Hi, I work full time, 3 days from home and that helps tremendously. I can get more rest and don't have to rush around in the morning. You may want to talk to your doctor, perhaps you need to adjust your medications?

Thanks so much, I’m due to have an appointment with my consultant later this month before he writes his report. I’m going to mention working from home as this may help in as much as I can move around more and it’s a more relaxed environment to work in.

Thanks for your support!

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