PBC Foundation
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article about 'invisible illnesses' and disability. Author calls for a rethink of the organisation of work

I hope this link comes out properly. It's a really interesting article about the nature of 'invisible illnesses' and the impact they have on people who are trying to continue to work. The author (Jason Reed) suggests the the whole organisation of work (particularly in terms of work patterns and hours) needs to be reconsidered.

I found it very refreshing to read an article that questions the way we view the working day as something that is fixed and unmoveable.

There is definitely room for new thinking


5 Replies


That was an interesting read. I am very fortunate, I work in a senior management role in the public sector (full time) and my manager has been very supportive since being told I have pbc. I have explained that most days I am perfectly well, but there are odd days when i feel very poorly. I am comforted to know that if I am not at my best I can go and work from home or do the work at the weekends, or evening when ever it suits me really. This type of back up plan means I can be ill without worrying about work which I am sure not everyone has the luxury of. My symptoms tend to last for a day or so then I feel perfectly normal again. I cant plan for these off days but if i get them then I stay home and rest and catch up when I am better. Who could ask for more than that?


Hannah, it's really good to know that there are some really good employers out there who take their responsibilities to employees seriously. Life is a lot less stressful if you aren't worried about work as well as health. I would imagine that your employers commitment to you makes it much easier for you to be committed to them!


I work for a really good boss and I sure he would understand and let me work from home or weekends if he knew I had PBC! I feel quite a fraud as I do not have any of the symptons and therefore doubt I have PBC although I had a liver biopsy and it was confirmed. Also I have not told anyone at work that I have PBC. I do not want people to know I have an illness. Maybe I should be more open about this condition.


Hi Goks, You're not a fraud - you just don't have any symptoms! But I know what you mean - I have some symptoms which have left me unable to work for almost a year. however, I know that I look well - I am not pale, I haven't lost any weight and I can move about quite freely. However, I can't engage in any kind of complicated comversation, I have difficulty with reading and processing even simple information and I could sleep for Ireland. I have itching and pain too but they don't trouble me too much - I find them manageable compared with the tiredness and the fuzzy head.

I know that people think I am swinging the lead and it makes me feel very helpless. My employers know that I have PBC and they are aware of the symptoms. As i have not yet returned to work, i have no idea how accommodating they will be but I suspect that it will be very difficult to negotiate something helpful.

My previous employer on the other hand had a fantastic approach to dealing with people who had illnesses and long term conditions - including giving paid time off, making all kinds of adjustments in terms of hours, working from home, place of work, job descriptions and extending the period of full pay for sickness absence for people who had a diagnosed long term condition.

It is encouraging to know that there are good employers out there.


Indeed a very interesting article and very apt my reading it now. I just returned to work last week after being off for 6 months mainly down to intractible itch but in the last few months I have found the fatigue a bit worse. However I am not a quitter and will keep trying to get the work/ home/ health balance right. Now since reading that article I feel more armed to put my case for maybe doing flexible hours at work when possible, to help me work around my fluctuating symptoms, specially the fatigue. Thank you for sharing it with us all. Take care and a Happy and Healthy New Year to you:-)


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