Work and pbc

[geraldine60]

Hi.

I'm in the UK. waiting for confirmation of almost certain PBC so pretty down. Im a nurse who is desperate to work. I can't take the thought if being disabled and redundant. My main joy is work. I have no kids and time weighs heavy unless I can have stimulating work. I am a comm unity home visiting nurse, and my bosses dont know my diagnosis yet but am scared Ill be forced off Im 60. Anyone else working?

[Hidden]

Hiya,

I work, part time at the moment due to having young children but I’m hoping to increase my hours in the next few years.

The thing with PBC is that it affects us all to different degrees, some have terrible debilitating fatigue that can have a big effect on daily life, and so working is out of the question or might need to be done part time rather than full time. Others are able to work as well as before diagnosis. It’s all down to how you feel and what you can cope with.

Your employer should be supportive of your diagnosis but I know we don’t live in an ideal world, and some employers are better than others. You really should not be forced out of a job just because of a diagnosis however.If down the line, PBC starts affecting your work then your employer has a legal duty to support you and make reasonable adjustments, you would need to be open and honest about your diagnosis from the start however and give them chance to support you. My employer thankfully is amazing and we adjusted my hours to suit me.

If you are diagnosed with PBC then do join the PBC Foundation they are incredible.

Best wishes x

[rderezin]

yes..

I worked 20 years after getting PBC in heavy travel and long hour work..

only retired when my job was eliminated due to company sale. You'll do fine..Taking your drugs and regular blood work is a must.

[PBCRobert]

There are lots of people who continue working with PBC. The majority of people with PBC will live a normal length if life. Just by being 60, you are statistically likely to respond to treatment.

I hope that helps.

If you do get a diagnosis, do take time to find a good patient support organisation as well as using here.

[geraldine60 in reply to PBCRobert]

Thank you for the reply. It us slways good to hear a few positive words as so much I read about PBC gets me down, ie the fatigue and life limiting aspects. I'll sure join a group for support once diagnosis cleared up