It's looking highly likely I will receive a diagnosis of GCA + PMR. Of course this never comes at a good time for anyone but I'm trying to apply for new jobs, so it's not ideal especially as I'm at the early stages of being ill and am currently on sick leave. In employment terms I have around 20 years of working life remaining, if the current government extensions to retirement continue at their rapid pace, and no alternative source of income. I currently have a busy full-time job that should - in theory - be bringing me tiered salary increases over the years.
I work in a sector that has a well-organised job application process, and Equal Opps questionnaires. Recently I've been seeing that some of the jobs I'm interested in have an option to select 'Disability' including long-term conditions that guarantees an interview. This is all completely new to me. I'm reluctant to tick the 'Disability' box, not least because I'm not clear on whether GCA qualifies, but also because I'm not yet used to the idea of applying for something whilst unwell.
I'd be grateful to hear of people's thoughts on this and on how to approach prospective new Occupational Health assessments (my current Occupational Health team is very supportive but then they already employ me) - oh, and feel free to tell me it's crazy to even think about making the assumption that I'll be able to do a new job within three months of a diagnosis of GCA and still on 60 mg of prednisolone...
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CloudGazer6
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Have been out the working world for too long to comment as to whether GCA is classed as a disability. I think you need to check with your OH section and/or union but I have my doubts knowing the response when I applied for assistance a few years back. But I may be wrong. Assume you work in the public sector (another T shirt I own).
Good luck with any job you apply for, but you really need to be sure that you could cope with the stresses that a new job always brings. The last thing you need, is to start and then discover it's too much!
So I'll accept your invitation - it really IS a bit daft looking to start another job at a stage where you have no idea whether this is likely to be the diagnosis! Most people in your position have found it a struggle to manage their current job, never mind contemplating moving into a new post with all the stress that entails. And whilst it may not be apparent yet, 60mg doses of pred really DON'T usually lead to the sort of clarity of mind that new jobs require. Brain fog is a real risk - and that is just the illness, pred comes with its own side effects.
GCA does come under disability law. But I don't see that as the current problem. Your problem at the moment is that you have a serious illness and one that is likely to sap your energy greatly over the next few months, possibly even longer. Over the last 6 years I have "met" person after person who says they are going to continue working despite their illness. Most of them have to at least go part-time, some have had to retire on health grounds.
I know I have a reputation for being on the pessimistic side, but believe me, I think you may find that even continuing with your current job a struggle - and there you have supportive colleagues who know how good you are. In a new post you will be facing working alongside people who don't know you from Adam and who see only someone who moved in and is now expecting support from them. It is not likely to encourage a good working partnership.
Other may come along and tell me I'm talking rubbish. I can only speak from the experience I had continuing to run my translation business with PMR. I would read pages again and again to be sure I'd got it right, and still didn't know - brain fog from the autoimmune part, never mind the pred part. I didn't have to commute to work - and I still had to go and lie down at times because my brain had gone on strike and I was utterly exhausted. That was the autoimmune part. I worked freelance - I could choose when I worked. You can't do that in post.
Working with a disability is one thing when your brain works fine but you need a wheelchair or other support. Fried brain is another.
And DL's response reminds me of another aspect: stress does not make a good bedfellow for GCA. It can be enough to trigger a flare. Which just adds to the other problems.
I was diagnosed last June with PMR/GCA, I have just got down to 16mgs after 11 months - I have found working full time very difficult. I have had two periods of sick leave, each of a month. I have had to reduce my hours to cope with the condition and the side effects of the steroids, work have been supportive and allow me to work at home as well (They really don't want to try and replace me), this reduces the travelling a little.
As I reduced down, the side effects of the steroids became more apparent (I think the side effects are less now I am under 20mgs), I have had two flares and gone back up and restarted the tapering, so using the dead slow method at the moment.
I am unhappy in my job,it is highly stressful, which I know is not helping my condition. However, I feel reluctant to change at this time. My concentration and memory is not good, my current employers know this is not the 'norm' for me and make allowances. I also look poorly, very bloated ..... for me, have vision problem and am now being checked for an additional autoimmune condition, I would have a real confidence issue with interviews as I am presently.
We have many similarities on this site, but it also seems we each have our own journey, so I guess its if you feel well enough, then go ahead - but it is early days and you will find you need to rest, I fought this, but eventually accepted it and now rest when I need to, say No sorry I cant when I need to etc. I accept that I cannot do the things I did before. Its been life changing .........
Companies by law have to take on so many disabled people, so it may possibly help your chances of getting something. I know how you feel though that people may then categorise you. I believe GCA qualifies for disability, but PMR does not, although I may be wrong. How do you feel now about doing your job, are you up to it? As the others say, it can be difficult trying to work with GCA, particularly early on. I continued working with PMR, but got very fatigued and had to take it easy. I have one of those office chairs that can recline back, which was useful, so I could have a little rest every so often! Also I stopped carrying our heavy equipment. I am a director of the company so I can get away with opting out of things and taking it easy.
I continued to work through having PMR... looking back I really should have gone to half time for a while, taken more initial sick time off to come to terms with the illness, and avoided flying and work trips as much as possible as they always caused difficulties (only did a couple of work trips, not a good idea at all). That said, I found it good to be working, as otherwise think I would have sat around focusing more on the illness, and it got me up and about. I work from home though and every situation would have its own considerations.
Thank you all. You are really helping me think this through. I’m probably indulging in a lot of wishful thinking.
@PMRpro - not pessimistic, but a very helpful realist. I hesitate to say I have the diagnosis formally because I’m trying to be an ‘obedient’ patient regarding medical phraseology and my consultant has included the word ‘possible’ with GCA. However, I think it’s pretty clear cut: I meet sufficient diagnostic criteria according to the guidelines, had a very rapid improvement on 60 mg pred and have all the physical symptoms, just not (so far) a positive ESR (but I was already on a low dose of pred by the time it was measured). I get the TAB results next week but I suspect that there will be little doubt whatever their outcome and no other likely alternative diagnosis has been suggested, just additional autoimmune components too, including PMR and other associated problems. I have already had very severe rebound or flare up pain at the first attempt of pred reduction, an clear return of visual problems, and a hospital admission.
@piglette and @lesley2015 - My current job - well, I really like the components but the environment is not supportive and is by its very nature highly challenging. Initially when I couldn’t manage because of the pain I asked to do more sitting down or from home but this wasn’t well received. I tried to continue as normal but I got much worse. I have already been off work for 2.5 months as I have been unable to walk, climb stairs, use my hands properly, stand up for long or concentrate properly and the job involves all those things all the time. It’s taken a while for the various doctors to pull together the whole picture as it hasn’t always been clear what is happening. I guess I am being hopeful in thinking that an alternative job might be more supportive or at least slightly less physically challenging. Perhaps instead I should be thinking that if I’ve already been off work this significantly I’m unlikely to be able to have a straightforward phased return over a short period of time.
If I’m putting aside the wishful thinking, currently the head pain and sight problems may be mostly alleviated on the 60mg but I still can’t walk much or use my hands at times, I’m only sleeping about 2 or 3 hours a night, can’t see properly in the early mornings, and have waves of feeling very ill. I perk up in the evenings and early mornings but the middle of the day is pretty much wiped out. I guess I was hoping that all these components might be down to the pred side effects, and so might improve fairly soon if I can start a slow reduction. Maybe I’m underestimating the illness symptoms themselves and interpreting them as medication side effects when that may not be the case.
I quite happily put a coat hanger in the fridge this afternoon. Brain fog reigns.
You have to remember that the pred is actually only relieving the inflammation that an underlying autoimmune disorder is causing. The reduction in the inflammation reduces the pain and the risk to your vision, though it doesn't remove it entirely. Underneath the illness is still going on and causing damage to your body - a bit like having a severe cold and dosing yourself up on aspirin and whatever to minimise the symptoms so you can go to work. It doesn't usually leave you feeling well - you still sneeze and cough and splutter. The real illness you have is still giving rise to some symptoms, affecting muscles, making you feel tired - all the rest of it.
As runrig says - GCA being covered under the disability act does mean it counts to your employer's record and earns them brownie points BUT I bet they often do their best to put new staff into less coveted roles. Or use someone who can't cope as a "reason" not to do more.
Cloudgazer, 1-pm is my time, its like hitting a brick wall, I find it hard to concentrate or speak and from that time on need to rest or nap. Recharged - I can then start again. Its almost amusing, wherever or whatever I am doing, you can almost tell the time by the fatigue and speech.
Sleep at night has improved but only for me, below 20mgs. So that caused a lot of difficulty too.
The condition changes and throws lots of curve balls, and as we look mainly 'well' is often difficult for people to understand.
Some days are so difficult, others are better - thats when generally I overdo it because I feel better, then feel worn out the next day. Some times I do try an not to overdo it but others I take advantage of a day when I can be more normal and accept I will pay either later in the day or the following one.
I have had PMR for about 3 years and have worked full time (4- 10hr shifts per week).
Every day is a struggle to go thru to the end of the shift.
It has been a very rough haul. I have had to face the fact that stress from work adversely affects my well-being and I have re-signed from certain 'volunteer' functions at work. The same goes at home.
One of the problems is that 'we' look perfectly normal, and when 'we' take our pred and meds, 'we' even feel that 'we' can continue as before the blasted disease hit.
PMRpro is quite right when she says that this is a serious illness and just because we are propped up by pred, we can't keep up to our pre-pmr standards.
Now you have GCA as well to deal with. This is not a minor illness.
My advice, as a full time worker, would be: stop, hold where you are and get the gca/pmr under good control. And be prepared for this to take some time (ie months)
And, be kind to yourself. Your life, for the time being has changed, and in order to salvage what you can, in hope that you will have a full and good recovery, your mindset will need to focused on Y O U.
I am 50 yrs old and developed PMR at 46, and GCA at 47. I work full time as a nurse on a busy orthopaedic ward. I agree with others that it is a challenge each shift working with these illnesses, and that's with the support of colleagues who know me.
I would hold off applying for new jobs at the moment. Yes GCA is covered under the disability act, which may help with finding a job, as employers have to employ a percentage of disabled persons.
I seen my OH last week, who told me because of my GCA I'm disabled. I argue at the moment I'm not, I am ABLE to do everything for myself. Albeit takes me a little longer, she told me most people would be pleased to be told they are disabled and can apply for a blue badge, but I'm not one of them.
This illness is a long journey with many ups and downs along the way, and adding stress to the mix will make things worse for you. I wish you well, Runrig 😃
As you know I have GCA, and although lost the sight in one eye have never been told by anyone that I am disabled. In fact, regarding eye loss have virtually been told the opposite - it means nothing!
I do have a blue badge but that's because I cannot walk far with arthritic knee and back, certainly not associated to GCA. And, like you I'm not pleased about it - its a necessity, not a luxury.
I think you should continue with your application.....tick the box.......this will enable your workplace to get funding to co assist you to remain in the work force.....maybe try not to overthink your situation....if you are right for the job and you have been honest about the fact you will need assistance to commit to the duties required...trust me they will do their own research and either hire you or kindly disregard your application....either way you are keeping your hand in, and that's crucial.....what will be will be regardless of your strong capability......that position will be filled and if it's you they can never say they didn't know....hugs and good luck with your diagnosis and future 😄😄😄
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