When is it time to stop working?

Hello folks,

It’s been quite some time since I’ve been here on the forum, a reminder email just popped up and I thought I would have a look. I miss the great advice and experience so I though I would say hello and ask a question that has been bugging me since we went into lockdown here in the UK some 12 weeks ago.

Life has changed drastically since I last chatted with you folks. I am a bit older, more grey hairs on the head and with no access to a hairdresser I can see my real hair colour for the first time in 15 years, it made me chuckle to see how grey I’ve become. Older but non the wiser and for the past year I’ve been feeling the full force of my good friend PsA. We’ve had a fractious relationship with ups and downs, (well more downs if I’m honest). I have changed treatment a couple of times and I’m now on my 3rd biologic (Benepali). Symptom after symptom after symptom, you name it I’ve had it. There has been things happening to my body I didn’t even think was possible. Hey ho, I’m coping and I have a phone appointment with my Rheumatologist next week, which is way overdue as we haven’t spoken since September 2019. With all the focus on the virus, understandably appointments were cancelled so fingers and toes cross I can actually read him my long list over the phone when we speak. He is so going to love me (I think not :laughing:).

Anyway back to the question at hand. I know some of you had at some point in your working careers, had to make the decision to stop working because of our condition and I am in that dreadful situation where I don’t know what to do moving forward career wise. I resigned my university lecturing position and left after 13 years of teaching at the end of December 2019. I had too because the long hours and the 24/7 working was way too much for my body. My physical and mental health was deteriorating and I had to get my work and home life balance back on track. Since then I’ve been working in a secondary school (I think it’s high school for some countries) supporting students offering pastoral care. The hours are shorter, still Monday to Friday but only during the school term, so I don’t work during the school holidays. This arrangement has been great as it fits in nicely with my youngest daughter and I have been able to spend some long overdue time with her. However, my overall condition has worsened and noticeably so. I no longer can walk the distances I used too, I am exhausted after driving for more than 30 minutes and I am exhausted by 3pm every day. Getting out of bed in the morning is a hell of a task and general household chores is way more exhausting than it used to be. So all in all I am slowing right down. Don’t be fooled I don’t give in to my body’s inadequacies and I do my best to take on a new challenge every day. But in saying this, I am unsure if it’s time for me to end my working career and concentrate what energies (both physical and mental) that I have on getting through the day and on my family, especially my youngest daughter. I fear when I return to work and back to the routine of a hectic life, I’ll end up a complete heap of a person at the end of the week on a Friday night. If I’m truly honest this was becoming a reality at the end of February. So I need some advice. What made you stop working? How did you know the time was right? And if you are still working, how do you balance this with fatigue and exhaustion?

I would really like to hear some words of wisdom. Nice words please and I’m happy to answer any questions (within reason of course).

Thanks for reading and I hope to hear from someone soon.

All the best,

Nicole x


I think, Nicole, that we know deep down what we can and can’t do, even if from time to time our body tries to trick us. I’d just finished my PhD when I got arthritis, and I carried on with some teaching contracts for about 18 months. Then I didn’t get one for the spring semester, and haven’t worked again since. I was particularly bad at the time, and things didn’t improve for me until I went on biologics about two years after that.

It’s complicated. And sometimes you feel like a fraud for not working as, with the biologics, there are good days - some very good days - and even good weeks and months. But my own question is always, “how reliable would I be in a job?” I know that if I go for a walk on Monday, I’m probably not able to do that on Tuesday. And maybe not Wednesday. And if things are bad, I may not be able to do the walk in the first place!

Over the last year or so I’ve done a jazz gig (I sing) and prepared for a second one (cancelled due to lockdown). I’d go to rehearsal for 3 hours, sitting on a stool throughout, holding the microphone. And I’d feel just fine. In fact, I’d feel really quite good. I’d get home afterwards and think, “if I can do that, I should get my rump in gear and find a job of some sort.” My thinking was that I could relate the three hour rehearsal to three hours at work. But the next day, I would be in agony. Not just swollen feet because I’d been sitting on a stool for three hours, but hips played up because I wasn’t used to that kind of seat, and the fingers on my right hand wouldn’t straighten because they had been strained through holding the microphone for a couple of hours the day before.

There is something horrible about being at home from work when you know AT THAT MOMENT you could be at work and pain free. But it’s not just about that moment, it’s about what you are forced to do. If you can walk one day, you can go for a wander. But if you’re at work, you don’t have a choice of staying at home if the arthritis flares up or if you have a particularly painful day, or week, or month.

For me, it is that lack of reliability on my part that made me realise I might not work again in an official capacity. I’m lucky that I can keep busy at home, writing and researching - but it’s writing articles with a Prof at the uni, it’s not paid, and I can do the work as and when I like - splitting three hours work over seven days if I want. Or it’s writing books for my own enjoyment. It’s important to keep that brain ticking over, of course, and it’s good (for me at least) to have things I am working on - I made an hour-long documentary on my area of research from the comfort of my own bedroom during the first weeks of lockdown, for example, and it’s been really nice to see it viewed by lots (and lots!) of people on YouTube etc. But it’s at my own pace, and when my body was able to do it. There comes a time when the vast majority of jobs don’t give us the complete flexibility we need in order to function - not even the flexible world of academia where we can prepare lectures and mark etc at home. But what good is that flexibility if you still HAVE to be at uni on a specific day of the week at a specific time to give a lecture - and you don’t know how you’re going to be at that exact moment?


Hi Nicole,

Nice to here from you again. I’m in Kent too. I work full time but from home and that was before Covid 19, only then needing to go into the office in Canary Wharf once a week or so. I make final decisions on comsumer complaints about financial businesses like insurers, banks etc. So I need my brain working on all its cylinders but I also need to sit at a laptop for too long too.

With the symptoms you’re describing it sounds like to me that your biologic simply isn’t working well enough for you though. I like you am on my 3rd one too. I like you am presently wondering whether it’s working well enough too. But this pandemnic has thrown so much up in the air anyhow it’s difficult to properly assess sometimes. But that sort of tiredness and exhaustion you’re describing and lack of oomph is usually indicative that your meds aren’t working for you.

So a few questions - what age are you? And what were your other two biologics? And how long have been on Benepali now and did you have to miss any doses of it in the first 12 weeks?

I don’t think PsA necessarily means eventually we have ‘to stop’ working actually. I think when the meds work, our working lives with possibly some adjustment can continue too. And remember there are more and more meds to try. Reports of the JAK inhibitors are pretty encouraging.

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Hello @Poo_therapy and @darinfan,

Thank you both for replying.

I have just come back from food shopping. The supermarket isn’t too far from where I live on a good day 15mins walk, on a bad day 30mins. My daughter came with me as I knew my trolley on wheels isn’t big enough to bring all the shopping back home. Why am I telling you this I hear you ask? Well doing the shopping answered some of my questions. I am now so knackered that I can barely coordinate my hands to type. I just haven’t got the stamina anymore to keep going as I did say 10 years ago.
I have been a long term back pain sufferer for 18 years. At my last appointment with my orthopedic surgeon in 2015, he only had a triple fusion from L3 to S1 on offer and a 50/50 chance it would improve my situation or leave me permanently disabled and chair bound. The odds didn’t seam good to me, so I opted to stay on medication and have spinal injections when I can’t cope. That same year when I was finally diagnosed with PsA the pain continued. It was no longer my back but every joint in my body. During the past 18 years, I’ve been pain free for 6 months with my back, 3 months arthritis pain free while on the biologic Cosentyx and 3-4 months while on the biologic Imraldi. So by my calculations I have had some form of pain in or around my body for nearly 17 years. My body doesn’t know any different now and really wouldn’t know what to do with itself if and when it becomes pain free.

@Poo_therapy I am 48 and a mum of 2. I have worked and studied since I was 18 and continued working in some capacity even after I had both my girls. I don’t know anything else but working, studying, running a home and looking after my family. I live like most people trying to make ends meet, the only difference is that I have been fighting with my body for a very long time and no matter what physical therapy (physio, osteopath or chiropractor) medication (medical or otherwise), swimming , pilates, yoga or psychological therapy I have tried my body is still winning.
I am however very lucky in that my family have true no choice of their own, come to understand and empathise with my conditions. They know when I say I feel unwell that I am really not good for anything at that time. My story isn’t just particular to me. There are many people out there who are in a similar or even worse situations. What I want is my health back and this isn’t going to happen anytime soon. Presently I am flagging, brain fog is at it’s worse, my memory is poor and my fatigue levels are sky high, it’s been like this for months. So yes @Poo_therapy I currently do have a high level of disease activity and it has been like this for quite sometime now. I am hoping Benepali works, if not on to the next one and the next and the next. I have no intention of stopping living, but I do have to make some alterations with my life style and I think the time is now. Finding a job where I can work from home and working when I feel good and resting when I don’t will be the best possible outcome.

I didn’t plan on writing this much but strangely enough it feels therapeutic. Any more words of wisdom would be greatly appreciated.

Many thanks,


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I hear you Nicole. I’m 45 and have a ten year old daughter. I’ve had PsA for around 8 years.

About 5 years ago I had some major life changes, and worked pretty hard to transition myself from an exec management type role with international travel, to a working-from-home part-time, flexible role. It’s less than half the pay, and it’s consultancy, so no security, but it made an enormous difference in how I was able to manage my disease - the full time role with half-way round the works travel was told much for my body.

It allowed me to be much more contented, and have the energy to be present and supportive for my daughter, who really needed me.

I seem to be back in another gap, so I’ve taken another step down and am not working at all for a little while - hopefully that will pass. Despite that, I still walk my dog each day and go horse riding once a week. Now days I’m much better at listening to my body when it asks me to slow down!

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I have been thinking about stopping and retiring and taking disability for a few years. Now that I have been wokring fomr home for three months, I have seen what the strain of communting and the stress from wokr was doing ot me. I have flet better while working from home than I have for 5 years.

I have decided to throw on the towel. I have enough years I can retire form my job, so I am going to do that in August and file for disability.

My wife said I have to make sure I don’t just sit around and waste away. I think I can find some things to keep me busy.

It was a hard decision. I hadn’t thought staying home would make much difference, but it has. I am even off the Humira and feel better than I did on it and at work. I knew the tie was right.

Good luck.


I can certainly understand better now. And thoroughly agree you do need to change things. I merely deal with PsA. I don’t have an endemic back problem. Although I’m on the cusp of osteoporosis which has its own issues. But generally it’s get my disease activiity under control and I do well, with it out of control I don’t do so well. It’s clear cut with me or at least clearer. And more of a thing that PsA meds are either working or failing.

So I think there will be lots more interesting opportunities given Covid 19 for flexible working. The entire country’s office based industries has suddenly found out they can operate with its staff all working from home. My employer has 2,500 people all working from home now, most doing the same amount of work they did whilst in an office. Before this it had around 400 to 500 people working from home mostly. Banks, insurers and other office/service type industries have discovered the same.

So I would get looking and consult with some decent job finders too. Or if you can afford it - just stop.

I’m very big on life is for living. I enjoy my work and the intellectual challenge it gives me. And I need its income. But all of that is pointless if I can’t walk my dog daily and get out into nature. It’s only then that my soul sings just a bit and I need it to sing just a bit always.

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I stopped working - thought I’d take a year off - because clearly something was wrong. 2 or 3 months later PsA hit me like a truck. I should have stopped sooner.

I do exactly the same i.e. protest that I’m not a lazy wimp. So I quite understand but I don’t think you need to do that with us! Trust yourself, do what you need to do.

Best perhaps to keep a door open to future opportunities. If Benepali delivers, which I hope it does, you may want to work again or to take on other challenges. And of course there may well be home working opportunities in education in the near future.

I’ve been trying to write something about self-esteem and how it gets all tangled up with work but it’s quite tricky to explain what I mean. I guess the closest I can come is to say that stopping work and getting PsA did give my self-esteem a bit of a bashing at first but so did fooling myself that I could carry on.


@Poo_therapy, @Sybil, @tamac & @Jen75

Thank you all for replying.

I went to bed last night trying to talk myself out of making this decision. I told myself I was being selfish and my daughters need to see their mother working. I even argued that we would be on the breadline if I didn’t work.

I woke up this morning and for a micro second I felt ‘normal’, but then the pain in my knees hit. They are paining so much that the tears just rolled down my face, no sound, no moans, no groans just tears.

I wasn’t entirely honest when I spoke about my youngest daughter. I did purposely leave a portion out of our life out in my conversation with you all. She’s a child that has always found getting on in life a bit harder than most children do. Maintaining her mental health and well-being has been a journey all of the family has had to take for the past 3 years. Last December she had a neurodevelopmental assessment and was diagnosed as being on the autistic spectrum. She is a beautiful child but finds the social framework of life difficult to navigate, so she can be vulnerable at times. What I am trying to say is that I (and I suppose most of us with this horrendous condition) often try to be the the pillars that supports the monuments of our life. This is a endless and unforgiving task. Instead what we should be doing is putting the monuments on the ground and allowing it to support itself, so we conserve our energy and so are stronger and more effective when we do help. I think it is my time for my monuments to be placed on the ground. I know my family will benefit more from a stronger me.

Once again, thanks for sharing you experiences with me and more importantly your honesty.



It’s also worth remembering that if a wonderdrug ermerges or a med really gets everything under control, you can always think about going back to work (job openings permitting). I think most of us take one day at a time.


That’s a really good point darinfan, it doesn’t have to mean forever


So will you Nicole. It’s a bit like having to put on your oxygen mask first before you can help someone else with theirs. PsA, pain, incapacity is all incredibly wearing. Add it to jobs, family and income and it can become perpetually overwhelming. Self esteem and self confidence is often wrapped up in a career too. And dare I say it for us women it’s often deeply complicated and complex for the age old reasons of societal bias sadly.

I was lucky enough when PsA hit me like a 10 tonne truck from nowhere to be attending a psychotherapist for different reasons. Obviously then I continued on. It helped an awful lot to reset my priorities facing what has been something of a roller coaster journey at times. And it helped me to see how to channel my rather forthright personality towards better things or at least get better outcomes. It helped me to reset myself if that makes sense. It remains the best £40 per week I’ve ever spent. Worth thinking about for you possibly as you face yet another life change of stopping work or changing work.

Looks like I am very late to reply. Also looks like I am much older than most of you. I’m 70, Psa reared its head when I was 69, March of 2019.( I had had symptoms for 20-30 years but not pain and no one said hey you might have Psa) I denied it for awhile but reneged and started taking MTX injections weekly and sulphasalazine daily in Sept of 2019. I retired in June of 2019, mainly because it was time, not necessarily due to Psa.
Anyway after that needless preamble, my advice is -“quit whenever you can financially!” It frees the mind, allows you to focus on you and what is important to you. Yes people say you’ll be bored, well- fix it -find something you like to do! Hope that helps a bit, all you youngins’


I think I told everyone that I finally decided to retire and file for disability. Working frmo home has shown me how much more pain driving to an from work plus the stress adds to my PSA. I had planned to retire on August 3rd, but now they have extened our work from home until end of July. I was going to work most of July to train someone.

They have had such success with people working from home it sounds like everyone will only be working inthe office two or three days a week whenever we go back. They want to reduce the footprint inteh builds and lower the rent. I still need to try and train someone, so I may see how long I can deal with working in the office 2 days a week. I think I will still retire very soon anyway. But, as long as they let us work from home, I will keep working. The COVID is getting bad again here, so it may be some time before we go back. My wife’s company said they would not go back before Fall, and it may even be after the first of the year.

I’ll keep everyone updated.

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A very good question indeed. I was self employed. I had my own factory. Twelve months prior to closing the doors I was was struggling just to get through the day. In the back of my mind I guess I knew but it is very hard to give up what you built with your own hands from the ground up. It took my GP to tell me that if I didn’t give it up I likely wouldn’t be around in another 12 months. By the time I closed the doors I could barely walk to the front door from my couch and had to rely on friends to close and sell everything up. It wasn’t until I gave up work that I could start looking after myself properly. Regular visits to my specialist and GP got me on medications that have stabilised my condition. I wish I had caught it all sooner and not been so stubborn. I might be in a much better position today. Don’t wait until you are almost Crippled before you make the decision to pull the pin on work.

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Doc told me last month I missed the window for SSDI. SSA now thinks that if you can work from home, even if it takes you 12 hours or more to get your job done, you’re not disabled. He hasn’t been able to get anyone approved for the last 9 months and he had told me it would be now problem for me.

I can work from home I guess. I’ll feel bad whether I am working or not from home.

It’s interesting you say that Tamac.

With all of the COVID workplace adjustments (ie working from home or external from the worksite.) that’s been put in place these insurance companies have another easy void to use in their assessment of claims. If you’re injured at home, that’s not a workplace claim.

I applied for the Australian equivalent to SSDI, Disability Support Pension (DSP), it was rejected. I had a TPD policy and the insurer sent their own Dr from interstate to make the assessment. The assessor run me through all of his questions, looked at the medical reports and said to ‘Well, technically, you’re screwed. You’re not going to recover…’ I honestly thought if the DSP was rejected there would be no way I’d get the TPD. but it was approved :astonished:

I asked the lawyer to obtain a copy of the TPD medical report, I then reapplied for the DSP using that report and got the DSP approved, first shot. That was probably 5yrs ago now. The insurance company who issued the TPD policy have now changed their criteria of Total Permanent Disability cover. Policies now state that to claim you must be ‘unable to complete the tasks of daily living’ ie unable to shower or complete personal hygiene tasks ie Toileting. So in very basic terms you’ve now got to be wheelchair bound to make a claim.

I’m not sure these companies have any sort of moral compass anymore (That’s if they had one before). It’s all about the $$$$$.

Merl from the Modsupport Team

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I had a third party disability insurance through employer also. I learned after researching them on the internet they were harder to get to pay than SSDI, so I dropped them.

I think if you can breathe, you are not disability anymore.

Yes, I agree and sometimes it seems like the questions asked are “loaded” and the real picture of exhaustion and constant pain isn’t seen.


I’m sorry you’ve had such a battle. You say you wish you’d caught it all sooner: were you diagnosed only after you had given up your business?

Stubborn is good most of the time, but many of us, like you, kept going to our own detriment!

Glad to hear you’re doing better!


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