Finding work with PBC

Hi

I was diagnosed with PBC a couple of years ago and have only recently been directed here via my specialist. Having read some of the Blogs on this site has given me a better insight into my condition.

I have been out of work for a while having been sacked by my previous employer, as they said my work was not good enough. I worked in I.T. and In hind site I now realise this was probably due to PBC and my lack of concentration.

I have since been looking for work but am at a loss what to do as I can't concentrate for long periods, I suffer from fatigue and joint problems (Osteopoena), so manual work is out of the question, and I know mentioning it to prospective employer's would be detrimental to them employing me.

I live alone and I find I am spending long hours sleeping due to the fatigue, although I do try to go for regular exercise, but I have had to dramatically cut back on the amount I used to do before PBC due to the post exercise pain.

My social life has dwindle dramatically as it was based around running and cycling clubs, and I try to avoid pubs, and social events that revolve around alcohol.

I'm finding life tough at the moment as I have a mortgage to pay, need a job but find it a struggle to do normal things like shopping/cleaning etc. So don't know how I'll cope if I do get work.

I'd be interested to know what sort of work other people are able to do who have PBC, and whether they have obtained any advise/knowledge from employment advisor's, or changed their career ?.

9 Replies

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  • Hi Ed272... where do you live? I know that in the UK there are organisations who are tasked with assisting people to find and retain work. I will go now and find some contact details.

    if you live outside the UK, there are probably be organisations who provide assistance to people who are disabled or who have chronic illnesses like PBC.

    The PBC foundation might be able to direct you to such organisations outside the UK

  • Hi

    Thanks for this I'm based in Merseyside UK.

  • Hello ed272.

    I was in work that was rather demanding the yr I started with the itch (2010). What made it worse was I was supposed to be working part-time (21hrs per wk) as an assistant shop manager but within a few mths of starting the job (2009) my full-time colleague who was the manager went on sick leave for 5mths. So I was left at the helm with an area manager on my case all the time (as was norm as all the shops got it too).

    I only got paid for a 37hrs per wk post but I was clocking up around 47hrs per wk a lot of the time I did the full-time stint.

    I had received the hospital appt to see the doctor for the first time as my full-time manager returned but it was many wks off. I had no hols from Dec 2009 until July 2010 and was feeling the strain big time. It was whilst on holiday that my husband suggested I finish the job, it was far too demanding and did we really need the hassle and the money. After much discussion on my return I quit the job. It didn't take much time out after to realise I had made a bad move going there as my prev part-time job was by far better (but some things you never know until you try and if you don't you'll always wonder as I see it).

    I finished the job but I do not want to remain out of work as it's not exactly me. I had been supporting myself for yrs and had been widowed in my late 20's and was working when my 2nd husband and I met up in 2008.

    I have worked in a variety of different jobs since leaving school back in 1980, clerical to manual and have found for me I prefer being on the go in work as opposed to be sat down almost all the time. I do think now that altho' there would be times I would feel tired in work, I find even now that if I am on the go during the day I feel far better. Since starting with the itch (mine is night only these days), I find I have that thing about if I was to sit down too long in the day I might start to itch as just watching a movie from 9p.m. onwards is not a comfortable experience.

    I was begged to go back working voluntary in a charity shop for our local Hospice in 2010 so I returned and I just work one morning a wk. But I am fortunate that I can work unpaid for the present.

    Like you too I have sort of dropped out of social events as they revolve around alcohol. I find that most of my family just don't seem to get it. I know one can't tiptoe around subjects just because I have PBC but I actually dread the day that I might have to be at one and someone who doesn't know starts on the banter of, "Just one wouldn't hurt", etc. as I haven't had any alcohol since I got my first abnormal lft back in March 2010. I was never much of a drinker prior to this time so it doesn't bother me.

    The hospital doctor did say to me I should mention to a prospective new employer I had PBC and I said to him that no way would I do such a thing (you don't have to, I checked) unless I deemed it necessary. I think if I did this it would prob give me a zero chance of a new job.

    I am planning on going back into a manual environment myself. I did feel tired prior to quitting a domestic post (worked 11a.m. until 3p.m. Mon-Fri medical centre in surgery hrs) back in 2009 but was unaware it was prob PBC then and I just ploughed on. The itch started when I swapped jobs and was on full-time and covering 5 and 6 days a wk out of the 7. I think it is better having a job with more consistent working times like the 11a.m. until 3p.m. I did if possible, makes life that bit easier to work round.

    In my opinion here, I think with the job situation at the moment, I personally stand by my reason for not stating to an employer prior to gaining the job I have PBC. At the end of the day it all depends on oneself as to how you would dal with this issue. Good luck.

  • I agree with Peridot that being 'on the go' is best for me as the more sedentary I am the less energy I seem to have. I also find that a routine helps and working 10.00 til 4.00 suits me best. At the moment, however, my day is longer as I live 25miles from my workplace so I leave at 8.00 and arrive home at about 6.00. Although I am coping, I have no energy in the evenings and tend to slump on the sofa or go almost straight to bed. Working also keeps me in contact with people. When not working, I felt quite socially isolated and my confidence levels definitely dropped.

    Hope you find an answer that's helpful.

    Good luck.

  • Thanks for your reply it's nice to know someone can relate to how I am as you've summed up how I have been experiencing life with PBC. Especially with friends and family who basically don't understand.

    Sorry to hear of your loss, I can understand how you must have felt, as I had a similar situation with a loss of a parent, my job, and being diagnosed with PBC all within a short space of time. It just makes you tougher and wiser and makes you see what the important things really are..

    Like you I've stopped going out due to the annoying pressure questions of "You can have one drink", "Why aren't you drinking" and being tagged anti-social when offered free or introductory drinks, and constantly having to explain myself when I'd sooner not.

    It's also interesting to hear, that when your on the move you find things easier. Likewise with myself when I sit for an length of time I struggle with the fatigue.

    So maybe sitting in an office and not moving all day is probably no longer a good job role for me, and I agree in not declaring PBC to any prospective employer.

    Your reply has helped and given me something to think about

    Thanks again and take care

  • Hope you manage to secure employment.

    I recently applied for a job I can do but knew the interview date (today) and when job starts as was on the application details I filled out. Unfortunately I've not heard anything back so that put a bit of a downer over the weekend just gone so it is back to the drawing board as the saying goes, see what else is out there.

    At least we had a great weekend with plenty of sun and it is still shining here in the North West so that is something!

    Glad I was of some help in commenting and I definitely agree that family and friends just do not seem to get it with this 'PBC lark'. They mean well but where the odd times I do feel tired due to lack of prior nights' sleep it is simply just noted (when I start yawning that is!) that they also get tired too, rather innocently not realising that with this PBC it is something you have to just put up with frequently.

    All the best.

  • My employment issues have been the same as yours -looking back, my lack of concentration left me pretty much unable to do my work to a decent standard. As things stand at the moment, my job is still there when I am well enough to return.However, I suspect that the errors and oversights that occurred before I went off will not be overlooked and I may well suffer the consequences of my lack of memory and concentration!

    I've posted some links to government websites.

    Cynical as this may sound, i would strongly advise you to make some contact with a support organisation ( like PBC foundation for example) before you get in touch with the government organisations. This is partly because PBC is so poorly understood that you might want to go to the first meeting armed with useful information.

    Secondly, sometimes the statutory organisations just want to get their boxes ticked. They are perhaps not as creative as they could be in terms of supporting you to find something that makes the best use of your skills talents and interests.

    I think it is always good to go there armed with information about what it is practical for you and also what floats your boat.

    It might be useful for you to decide in advance what you are able and prepared to do for work. If you can't concentrate for a long period, setting your sights on something that needs a lot of focus or attention to detail might not be practical.

    The scheme that I mentioned before is Access to Work - it provides support and assistance to people have a health condition that might have an impact on how they manage at work. To be eligible you have to be already working or about to start a job. So basically, you find the job first and then apply to Access to Work.

    You can get the details on the link below. On that page you will see other supports available:

    direct.gov.uk/en/DisabledPe...

    A disability employment advisor can provide you with support and assistance with getting back to work. There is a bit of information in the link below.

    direct.gov.uk/en/DisabledPe...

    Please remember that it might be a tiresome process and you might get a bit disheartened along the way. This is a horrible time to be looking for work. I tend to think of it as like a stairway - everything that happens, good or bad, moves you one step up. You will have learned something from the experience and you will be able to use that to move yourself along.

    I hope this helps. sorry it's so long - i think it is my cultural and genetic inheritance!

    Good lock

  • When I was first diagnosed I thought my life as I knew it was over. That was 12 years ago. I now do more than ever. I work a 37and half hour week as an Auxiliary nurse. i am on my feet for a 12 hour shift. I have Osteoporosis and Asteopeana so I do have joint pain too. Yes I do get tired and yes sometimes I feel terrible but I like my job and being able to do something for other people worse of than me gives me the boost I need not to get depressed. I don't know how long this will last so count my self lucky to do what I do.

  • It's so great to read all You, just comfrotable, as You all know, what's that. I was diagnosed 4 months ago, though I have vevry bad liver lab tests for more than 12 yrs, but finally it explains why those different symptoms occured (bone, joint, heart, nerves and tireness. When I began to think about this, it was not good. In my country they don"t know much about it, so even the doctors. Or if they know, they won't tell anything. The hepatologist invites me twice a Year, he reads the results from his computer showing me his back. When I wanted to ask him about a diet, he asked me if I'm a doctor too. My son said, it was a full life, maybe grandchildren, but without them too. And yes, I have heared from friends and family, everybody is tired etc, So if You don't mind my poor Englihs, I'll post sometimes, but mainly read.

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