PBC Foundation
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Short term disability or not

To preface, I am in the US, so whatever ill health disability you have in the UK doesn't apply to me. I work full time in the banking industry as a bank manager. I manage a relatively small branch, and have 5 employees. Its a good company and overall they are very good to their employees. I have sales goals, however, and I am the type of person driven to succeed, and when I am not doing well, it bothers me greatly. Last year, I did ok, but not up to my normal level in many areas. I have my performance review this Friday and though my boss is a nice woman, I'm dreading that she may not give me as good a review as she has in the past, causing me more upset.

I have spoken to her and to my HR people about possibly taking short term disability to recharge. I do feel better at work when I have some time off, but it never seems to last. Its becoming more and more evident to me that I may not be able to do a 40 hours work week anymore and still produce. I'm not bad enough that I can't get to work and do a fairly good job, but to put in the effort to be a top performer, I just don't know if I am able anymore. Though I would really like to take some time off, I almost feel like I'm giving up and allowing my feelings to take over. I see both my Gastro and my GP in February and will consult with them on how I feel. Last week I felt great, but I only worked 3.5 days and had a pretty easy week and I had a few days off prior to that. I have spoken about reducing my hours, but I am customer facing and management, so not sure it would be fair? I am at a loss. I don't feel bad enough to not go to work, just not good enough to do well many days. Its hit and miss. Does anyone get what I mean?

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Yes, I get what you are saying. I have had similar thoughts lately. I feel like I do pretty well at my full time job (also in the US) - when it's just full time. But if I have a week that is extra long or pressured (conferences or all week meetings) I am wiped out and it takes me several days to recover.

I haven't told my employer about my condition yet - mostly because I don't want it to be an issue for me. I'm in a management role and want to be seen as a strong performer, too. I get what you're saying - it would feel like I'm giving in to the problem - or worse yet, using it as an excuse. But some days (like today at 2:30 p.m. in an endless HR meeting) I wanted to take a nap so badly. But...not an option.

I have also considered the possibility of some day taking a job that can be done part time. The joke is I'd take it and then only have to work 40 hours a week. :-) I'm paid well, so I keep at this - I have one more child to put through college and then maybe I can step away from the need to earn as much. We'll see.

I'm doing my best to manage this - and try to maintain a positive outlook even though some days are just plain old hard. I would say follow your instincts. If you think a short term leave would help, try it. Then at least you'd know. Talk to your doctors about it when you see them next - I'm sure they'd be supportive.

Hang in there and take care of yourself. It's not easy to feel like a superstar anymore, is it? :-)


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I do exactly get what you mean, NotorDJP, as well as I do relate to how you feel. And, I do hope that your lady boss would be as understanding as is mine. For had it not been for her I would never have been working up till this day. However, I work in a school as a teacher/administrator. I am 60 and I live in Cairo Egypt.

So, hang on and never give up, for with proper medication after thorough investigation you should be feeling so much better. Trust me and best of luck!


Yes, I understand. It's difficult. I reduced hours for 6 months when first diagnosed but then took a new job probably more demanding. For the first year it was just setting up a new office, 2nd year hiring and stabilising. Now it's a bit more pressurised as we are looking at new products/markets but the day to day stuff is being done by my staff with me overseeing. A lot of travel involved as well. This is what I had to accept 1) they want me for me 2) I can't do everything 3) they have given me resources and staff to help me 4) I have to use them. Simple? Yeah easier than it sounds. You can do your job very well, just don't try do everything.


Oh I get you too. I'm in the uk and work for the health service as a radiographer, and deputy manager. I've reduced my hours and feel life is much more manageable. I'm a much happier person. I have a better home life balance . I was absolutely shattered by the end of my working week wasn't emjoying work and had no patience with anybody. I spent all weekend trying to get fit enough again for Monday morning, so I had no useful time with my family and spent the weekend in bed. I work 3 days now I can rest mid week so I feel more able to do my job and I have Friday's off so I can rest up and have some time with my family it worked for me . I do need to work extra sometimes to either catch up on paperwork or when the manager is off but I can control that and it's only short term


Hi NotorDJP

I know exactly what you mean. I am 54 and was diagnosed in Jan 2011 but may have had it for up to 10 years before that. I do not have the pressure of a management position however my job is mentally challenging. I also have the added pressures of having a child of school age, being the main carer for my elderly disabled parents; one wheelchair/bed bound who recently passed away, the other with severe rheumatoid arthritis, running 2 homes as well as holding down a part time job (1 week 2 x 8 hours, the next 3 x 7 hours).

I found it very difficult when I was first diagnosed to accept that I had anything wrong with me basically I did not have the time to think or worry about myself. I pushed and pushed myself to carry on as normal until I eventually collapsed in work. My GP told me it was my bodies way of saying enough was enough and was shutting itself down. She told me I needed to listen to my body. I know now that fatigue is a big problem for me but at that time had not recognised that the tiredness I had been experiencing was more than that and would fight against it until I became quite ill.

I had been feeling very tired. Would fall asleep all the time, even while carrying out a conversation....became the butt of many a joke with my boys who found it hilarious and would play practical jokes on me. I was irritable. I would becoming exhausted while doing household tasks. I would get these feelings as if all the energy was draining out of my body and would have to lie down and sleep, it could happen at any time and there was nothing I could do about it...not so easy when at work...would have to fight against it which would really take it out of me and it was as much as I could do to drive home and then collapse onto the sofa and sleep. I was really struggling with concentration ... would have to read documents over and over again, writing would jump all over the page and tasks were taking me longer and longer to complete. I would forget what I was saying mid sentence, I couldn't string a sentence together because I would forget simple vocabulary it was really embarrassing. I dreaded meetings and still do, I sit at the back and try and avoid eye contact just in case I am asked to speak.

I recently made the decision to reduce my hours of work further, I now work 2 x 6 hour days per week. I had become quite scared driving to and from work. It was getting to the stage that I would drive to work and couldn't remember how I got there. At the end of my working day the 30 minute drive home became a living nightmare for me. The feelings of the energy draining out of my body became more and more frequent. I would have to drive home with all the windows open or have to pull over to the side of the road until the feelings passed because I feared I would fall asleep at the wheel.

Fortunately for you, you are recognising that it is becoming a struggle and that by resting you do feel better. All I will say is listen to your body. I know your job is very important to you but you also need to look after your health. I am sure you will be able to come to a happy medium where you will be able to carry on doing a fabulous job at work but also allowing yourself time of rest.

Best wishes


I have had PBC and Raynauds for 19yrs now, just turned 40 and been also diagnosed with systemic Scleroderma. I work as a front of house Receptionist for a local college full time 37 hrs a week and its a pretty full on job with a lot of responsibility. I was off sick for 6weeks over the Christmas period and on returning to work have decided to reduce my hours to 27pw. I have a 4yr old son and i was getting to spend very little quality time with him as i was wrecked after work and only managed to eat dinner then fall asleep. I started my reduced hrs yesterday working from 8:30am till 2pm with the agreement from my line manager for an initial 6months. if it all works out i will make the change permanent as i believe your health is your wealth and making time for yourself and family is really important. i can see my future now being more happy and content and this will make me feel healthier if im happier.

Take the time for yourself if you can, there is no point working full time if its affecting your overall health and happiness. You only live once so make the most of it please. I did and i feel better already x

Keep us posted



I absolutley get it! I am a paralegal and I I have to bill for my time. One hundred and forty hours/month. I am so fatigued and can't concentrate. I am not producing the way I used to. I am really scared the effect that it has on my work may cost me my job. Some weeks I even come in on weekends.

What can you do ?


Thanks for your replies folks. Its winter here and a rough one so far. Im sure that is not helping. I also have an elderly widowed father who I look after. I also teach sunday school and other things at church. Its the mental stress that kills me more than anything. I have some significant debt that I am trying to get paid off. Not sure I can handle it long enough to get that done. I have a large student loan that will never get paid off at the rate i am paying it. I just feel trapped. I am a bit hormonal today too. Going into work late this morning. Ill see what the doctor says. Thanks again.


I am in a very similiar situation to yours. I like my job but there is just not enough energy to do everything. I push through but end up getting hurt. Moved stuff at work and a cupboard fell on me, went skating this weekend and fractured my arm. Been trying to explain to doctors and friends that I find the constant lack of energy so hard to live with. "just do it if you have the energy" they say. But I have no energy! I make myself do everything, if I were to wait until I had the energy nothing would get done. I use my will power to find the energy to do everything. I am so tired and in constant pain (joint and muscle pain) that without my strong will I'd stay in bed all the time. I make myself do it all, nothing is automatic and easy anymore. I hope this is just a phase. And I wish doctors knew we might feel this way and help us find ways of restoring energy and joy. I push myself to feel enthusiastic too. Sad, really.

Hope things work out for you!

Best regards,



I completely understand "forcing" myself to do things. You are right, if it was up to me, I would probably lay around all the time. Now when I do have some energy I go like a house on fire and then wear myself out. I started eating better after new years and have tried to get some activity in, just basic stuff like my Wii fit and games and trackng my steps at work. I actually walk between half a mile and 1. 5 miles a day between work and home (I tracked it) way better than I thought. Of course I don't do it all at once. I'm also trying to lose some weight. I have put on 26.5 lbs over the last 3-4 years. I have lost about 6 of it, and trying hard to lose the rest. It has made me feel better, but like I said above when something happens (like my period/pms) or I overdo, I get back to where I was feeling before. I also wonder how much of my fatigue is depression, but then when I fall asleep the minute I sit down, I just can't see that as depression. I push myself to be excited too! haha. It is very sad. I'm afraid there may be no pill for that. Hope things get better for you too.


This seems to be a hot topic for everyone. With the individual varieties and expressions of this disease, I believe you determine it almost by trial and error. Right now, I am succeeding with a split schedule. I work 5 hours (9-2) then rest and work again from 4-7. I still get in the needed 8 hours/day for full-time status, and the rest between is a vital key for why I can keep working in my profession. Is your home close enough to your job site to do something like this? Good luck in figuring this out. I wasn't sure I would be able to continue working full-time until I found this arrangement. I am ok until summer, then I will have to determine a different schedule to meet my health needs and still teach students within the time frames that parents desire.


I understand exactly. I gave up my high pressure banking job a year before diagnosis. It was so hard and at the time I didn't know I was I'll and thought I was a failure in the high pressureised banking system. After diagnosis it answered so many questions and my mental position improved greatly. I now work self employed in something not related. Its been hard but it means I can pace myself and do what I want when I want. I hope you get to such a position soon. ( I'm in the uk ) x


I can't give mine up, unfortunately without totally going bankrupt. I have about 13 years of working before I could retire and get at my retirement fund without penalties. I really hope we can work something out so I continue to pay off debt and have a reasonable retirement. I can't collect Social security here until I'm 62. I'm 45 now. Even then, I'm not sure it will be funded then, so who knows what I would collect. I have a reasonable amount of money for my age in my 401K, but not enough to live on for the next 40 years with the debt I have.

I'm sure I could do something less stressful, but its hard to walk away from the money I make too. Its really tough


Some very helpful answers here, but I would like to try to look at things from a slightly different angle.

I would ask anyone reading this to make sure they have a pen or a pencil or something like that by the screen close to them.

Now that is done, I am talking directly to you...

Sit facing the screen in a comfortable position, legs side by side touching the floor. Put your hands on your lap.

Now... tighten your toes. Pull them in and really squish them into your feet. Tensen your feet as hard as you can, then focus on your ankles. Tensening your ankles will then help you to tighten up your calves, your thighs, your hips.

Clench your buttocks. Harder. Pull your stomach in tight and hunch your shoulders. Tensen your arms, wrists and even your fingers.

Now... KEEPING AS MUCH OF THIS TENSION IN YOUR BODY AS YOU CAN, slowly reach for the pen. Keeping that tension in your body, pick up the pen and hold it.

Those of you who relaxed, will have picked up the pen quite easily. Those of you who kept the tension in your frame will have taken a long time to pick up the pen.

Now, relax... Shake off the tension in your body. Loosen your limbs. And breathe...

The reason I have typed the above and asked you to look at this exercise is this:

The more stress we carry, the more tension we have in our body, the more difficult our daily life is. And it all adds up. Imagine carrying that pen in an outstretched arm. Just now, as you read this, you will manage fine. Another 10 minutes and the pen becomes heavier. Carry it for a whole afternoon, heavier still. Carry it for a week and it becomes unbearable.

It all adds up.

It's easy to forget and to live day by day by day by day allowing our emotions, our stresses, our tensions to get the better of us.

So, take a moment to evaluate where you are, how you feel and which stresses are appropriate and which are not...

This is just one tiny example of some of the self-management work we do here at the Foundation. If you get the opportunity, do please come and join us at one of our workshops.

All the very best,



Thank you Robert. That's a great analogy. I couldn't hold the tension that long, it made my muscles ache!!


You've pretty much described me, too sick to do a good job yet not sick enough for disability. Texas, USA

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