Have my first appt at the Rheumy clinic tomorrow, they have already made an appt for the biopsy next week too. Feeling a bit unnerved today.
can I ask those that are working, how do you deal with all this kicking off and keeping your employer up to date, what or how much are you obliged to say.
I’ve work in a relatively small UK company, about 25-30 people, have done so for the last 12 years as the lonesome finance member. Company too small to have dedicated HR or suchlike.
I very rarely take time off….pretty much 1 or 2 days a year, usually for a miserable cold.
I havent put any name to anything just said that I’m having tests for some abnormal bloods taken recently. A couple of colleagues have wished me well and said they hope the meds work and I’ll be feeling better soon.
can I ask how other people have dealt with their employer, are you obliged to tell them what the issue is (by name) or just the type of illness (ie auto immune, etc)
Silly, but I just don’t know how to be “ill”
Any tips please
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Cfmad298601
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I'm still working, but am self employed so I don't have to answer to anyone. I don't know how I would get around it if I was employed by an employer - very difficult, especially if you have a boss who is only interested in dynamics and performance. I'm not too sure about the legalities of what you have to disclose or not, but I would think it would be beneficial if your employer understood the nature of your illness and the day to day up/down difficulties you have to face rather than just being given a vague idea. He/she/they would be more likely to cooperate than resist if they knew the full story.
Personally, I would simply advise you to just be completely open and honest about everything. This is a systemic illness which will most definitely challenge you in so many different ways whether you're working or not.
I was teaching in a primary school and had some long periods of sick leave and 3 attempts to get back to work that all failed. If I hadn't been completely open and honest with the people around me, I would not have received the right kind of support or the understanding needed to give myself the best chance.
Unfortunately, despite all of this, it didn't work out for me and I was eventually medically retired, but many people do manage to continue working but often with a few strategies or tweaks put in place.
If you're intending (and able) to carry on working, you're definitely going to need both the support and understanding of the people around you, so unless you educate them as much as possible about your condition, they're not going to be able to do that effectively.
I feel there's no shame in admitting you need support or elaborating on what your condition is and explaining how your condition makes you feel and why.....one of the bravest things anyone can say is, 'Help"!.... and like every one of us here there'll definitely be times when you need help.
You have to make your own mind up of course regarding how much you tell people, but this condition is difficult enough to understand when you do know the facts. It can only serve you better to educate others so that they can be as mindful, understanding, helpful and supportive as you would hope them to be.
I am 63 and have worked for the same company for 20 yrs. It is the first time in my life I have been off on long term sick. I did inform my employer of my illness.
I have been off work for five months, have weekly care calls and welfare meetings to try to get me back into work, also had two occupational health meetings who advised employer due to fatigue and other side effects from steroids I would be unable to return to work at that time.
I am employed with a large company with lots of procedures to follow and have. I have target performance to meet so not wiling to take on extra stress.
I would let your employer know the nature of your illness, may help them to understand when you have bad days when you start tapering off steroids.
As said, you need to be open and honest when you know exactly what you have got...no point fudging around and pretending nothing is going to change.
Your employer may not know what GCA or PMR are, but they are responsible for making your working life as good as they can...and if they are a good company and value you, they will.
There are quite a few still working on here who will give advice, but maybe have a look at this from CAB...
Hi I fully agree with everything that Kendrew has said.
Even though your firm is small then they still have their legal responsibilities for their staff who have/develop a disability, which they have to work to.
You’re disabled under the Equality Act 2010 if you have a physical or mental impairment that has a ‘substantial’ and ‘long-term’ negative effect on your ability to do normal daily activities.
• Employers must make reasonable adjustments to make sure workers with disabilities, or physical or mental health conditions, are not substantially disadvantaged when doing their jobs.
This applies to all workers, including trainees, apprentices, contract workers and business partners.
Full details at link below - probably worth looking at so that when/if you discuss things with your employer, you do at least know where you and they stand from the legal point of view
In the end I guess, as we are all different and our disease affects us all in different ways only you can decide if you can carry on working as normal with GCA (assuming that is confirmed). Either way I think a full and frank discussion would be for the best, whether you need minor/major/or no changes to your working environment, or to prepare them for extra Doctors/Rhemys appts (might be wishful thinking!!!).
Are you already on pred? If so, what dose? That will also have a role to play in whether you can work as normal or not. High doses definitely impair judgement in many patients and can have a great effect on your own wellbeing.
Like GLP. I worked but I only have PMR and was self-employed and really aimed at working part time - though that could be in the form of a week of 16 hour days and 2 weeks "resting" doing nothing depending on what the client required! I didn't have to commute - except from bed to computer - and could choose my own hours which was a massive bonus. I honestly don't think that I could have done both commute and work.
As PMRpro says don’t get carried away -most feel really good on initial dose, but the crunch can come as you begin to reduce…and if pains are returning in the evening that’s needs watching.
Please don’t think I’m being negative, I’m not, but realistic…
I reduced my working hours by one hour so I would leave at 2pm (and then go home and get in bed). My hours were 7.30-3.30 but I get in at 6.30. Good luck.
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A big thank you to all pmr sufferers who have supported me.
Running on fumes at this point 
On my Final Month ! ( I Hope🙏)
PolyBursitis Rheumatica & Bacon Sandwiches
Hello - I'm new to all this.
