I am a front office finance professional with undifferentiated connective tissue disease, with strong risk to develop lupus as it runs in the family.
I have been having a bad flare on and off for the past 3 months and it is challenging my ability to continue my career in financial services. I am struggling with pain, fatigue, difficulties sleeping, brain fog. The job I am currently is very fast paced and often requires well more than 12 hours a day. The employer has been supportive with words, colleagues less with facts (still high workload, not much sympathy even when visibly in pain). My performance has decreased significantly, I feel like I am failing at my career, relationships, personal life. I have no energy for anything. I like the career I chose but I am wondering if this is sustainable with my disease and what else I could do. I also feel I cannot compete with "healthy" people. I spent 8 years in this industry and would not know how to change to what. This is creating a massive pressure and trigger of anxiety and depression. I cannot quit because I have financial commitments.
I would be keen to hear from anyone who managed to have a demanding, successful career that could provide some guidance or share their experience.
I feel hopeless and discouraged at the moment. I spent my whole career to get to where I am, I worked very hard and made so many sacrifices, and I don’t know what else I could do but it’s becoming very hard to continue as is.
Any advice and story is highly welcome.
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wiselyfair
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I don’t have lupus but I do have a rare form of vasculitis (granulomatosis with polyangiitis) that affects me in similar ways. I also work in the City / financial services in a front office role and have experienced this same dilemma myself.
It can be extremely challenging at times, as it can feel like you are just stuck in a cycle of work / eat / sleep / pain repeat ad nauseum when you are in a flare.
I think it’s time to sit down with HR and get some adjustments in place and possibly an Occupational Health assessment. (Occupational health can recommend adjustments if you can’t think of any) .You need to break the cycle and that probably will mean taking some time off and / or reducing your workload at least in the short term, while you chase rheumatology to get assessed and get this flare under control. Admitting that you need help is the first step.
I’d say talk to HR over your manager (or with your manager), as HR should be more understanding and aware of the firm’s legal obligations to support you, and any schemes / policies in place that can help.
Have you been able to get in touch with rheumatology or your GP at all? If it feels like it’s too much, can a friend or family member contact them for you? Hounding them can be half the pain sometimes and it can mess with your head if you are being ignored or not taken seriously. Your GP can sign you off for a week or so if you think that will help to just go cold turkey from work. UCTD and lupus fall under the Equality Act protection as does depression and anxiety, so they cannot dismiss you based on your ill health, and legally have to make reasonable adjustments for you. Adjustments includes time off when unwell and for appointments. 2 years of employment also gets you additional protections from unfair and constructive dismissal. You can get a free 30 min consultation from an employment solicitor if you are concerned about being pushed out. (Check the law society’s website to find one if you don’t know one).
You are not a failure, you are just spinning too many plates at the moment, one of which is the full bone China dinner set that is a UCTD / lupus flare!
Longer term, you may want to consider another role which is a bit more flexible e.g. middle or back office, but the biggest concern right now is getting your flare under control. You may need a short course of steroids or some other treatment. You should find your mental health also improves when your physical health does, as these rheumatological conditions can mess with our brain. There are documented links between them and depression in particular.
Once you’ve got your flare under control, you can start thinking about other things like long term career thoughts but you need to get your flare sorted first, as everything will just snowball otherwise.
I’ve had to do this myself before, to my immense frustration. I only have one regret: I was probably too honest with my last manager as she became obsessed with my health thereafter and then every “catch up” was always health focused when I wanted to be talking about career development. I’ve since changed roles and am at a different firm in a more senior role with more responsibility and have not disclosed my condition yet but thankfully I haven’t had to. I will cross that bridge when I come to it, and when I have been there > 6 months. (Some people might feel comfortable disclosing it earlier but I don’t, you do you).
I’ve had vasculitis for my entire post grad career as it struck just after I graduated, so I don’t really have a “normal” FS experience to compare it to, but it can be done if you want to, if you can keep your condition managed well. I love what I do and would be devastated if I had to give it up.
Hi - I think many of us here have been in your situation and it is truly horrid. Whatever kind of life or job one had before lupus or CTD, you are likely to have to make changes in the long term, unthinkable as it is. After diagnosis (with lupus - though I was mis-diagnosed with Rheumatoid and MCTD before that) I carried on working as a university lecturer until I became seriously ill and my kidneys began to suffer (lupus nephritis). There was little sympathy from anyone in my working environment - I felt horrendous but did not look ill, and at a time of insecurity in the sector was careful not to complain or take time off in case they got rid of me. The upshot was they got rid of me anyway and I ended up in hospital with failing kidneys. Talk to your HR and occupational health departments by all means - but my advice would be to consider going part-time and/or starting to look out for something less demanding to do. You can live an OK life with chronic illness but it won't be the life you had before. After not working for several years - which made me feel incredibly pointless, I now work at home, editing for postgraduate students and people who used to be my peers and colleagues. I don't earn much, but I am healthier than I was when struggling with academic overload, and have time and energy to take regular exercise, which is also my social life.
I'm so sorry if this is hard for you to read - I suspect giving up is not in your mindset. But it sounds as though where you are right now is pretty much intolerable - you need to rest, recuperate and gather your resources. There will be a way through and you will find it.
Excellent comments so far and I do feel for you. I worked as an FE Lecturer from my 30s to 60s and went through a few serious flares and other Lupus related issues whilst trying to work 10 hour days with wife and mother duties as well. It can be hard and was ultimately why I retired a few years ago. Like others I’ve had understanding colleagues and managers and the opposite, and regret that I didn’t go down the Occupational Health route. I kept my illness quiet when I was younger until I had to inform managers but as I aged I couldn’t do that. So my advice is to be open, get help, use any concessions you can get both informally and from OH. You must also think about you and look after you!! I had to give up a course of study at one point as I couldn’t manage everything and felt myself going downhill. But …. I took it up again later and achieved. So keep on keeping on but be aware of what your body tells you and use any resource that can help you. Very best wishes to you.
Oh bless you. Firstly you are not failing you are a warrior. All you are dealing with and still working, you are amazing. I recently retired through ill health due. I was diagnosed about 17yrs ago and managed my career quite well reaching the dizzy heights of a Director in education in secondary schools and was on the senior leadership team. My main responsibilities were child protection, behavior of students and Inclusion, a very stressful job. But I loved it, and my work were very supportive of me because I communicated with HR. They risk assesed me and made adjustments were necessary. I went to 4 days a week with one day from home. Then 3 days etc. On days I was not feeling good I didnt have to stay for team meetings etc.I tried as many ways as I could to do my job so that the students or my colleagues didnt suffer but my health just got worse and over the last few years till I couldnt even get out the bed. Which has led to were I am now and retiring last Sept. It broke my heart because like you I worked hard to get were I was and was well respected in the sector, I also raised 2 children now adults while doing this, on my own.
Im on methotrexate and steroids as well as hydrochloroquinine and was on these while working.
Are you in a union if so speak to them for advice and guidance. I did that. You need to sit down with your HR and line manager and have an honest conversation. I never used to want to let anyone down and would go into work even when unwell etc. I thought I was not replaceable. But now im out of it and after a 38yr career I dont know how I did it, I also now know me and my health are more important than any job. So go speak to those who can help make your life better, get advice, get support but most importantly look after yourself and put yourself 1st!!!!
Fantastic advice from everyone. My only bit is if you don't look after yourself, no-one else will and they will possibly lose a committed and tenacious worker with a passion for their work. You must seek advice from HR though and alert those people who HAVE the power to record all this stuff legally, especially as Jezzer Hunt wants all us "sick" people with nothing much wrong to go back to and continue working. If one person passes any sort of comment about "You're lucky it's only Lupus and not Cancer" - yep - it's true and was said to me, to which on a very bad fatigue achey sort of day when all I can do is cry..., I replied "I could do with a break, would you like it, I won't charge you a penny!" Pathetic, but I did feel so much better for a couple of minutes. People who don't know better can be cruel, so you just have to be better and rise above them. I include myself in this, mainly because as a child I was expected to plough through illness which was weakness and failure so some days I get pretty cross with Lupus. My husband is not a great empathiser, even though he had and has low grade Prostate Cancer which we've lived with for 11 years; people deal with their stuff differently - he doesn't suffer with fatigue and I do. Keep on with this group; they are all so kind, knowledgeable and helpful. I also paid the membership to the Lupus UK and you receive a lovely magazine which you could leave on your desk abd people might be curious as it really can affect anyone. So many people have not heard of Lupus. My GP rang me the other day and said that he felt Lupus was rare and as it was happening to me he would do all he could and if nothing else I'm educating him about me. The one really helpful piece of advice he gave me was to get in touch with the Rheumatology Department which I did to keep them in the loop for any potential progression of Lupus. Try not to worry 😳😁😁😁😁😉🤔. Can't believe I've actually typed that. Take as much care as you feel you can.
My hubby has been diagnosed with undifferentiated connective tissue disorder with some lupus symptoms too. He had to give up his very stressful and high pressure engineering design job and was unemployed for 9 months last year. He did some work from home, but couldn't earn enough so got another job, which he enjoyed much more, till they went bust in January. He's now got a job at a university doing research and finds their relaxed, flexible approach to working much more sustainable. He is feeling much better despite his rheumy not prescribing him any drugs other than a PPI and treatment for his rosacea. He maintains that keeping his stress levels down has made all the difference. He now makes sure he gets time off to relax every day and does very little at the weekends.
I think most of us who have been diagnosed have had to make some radical changes to our working lives, doing fewer hours, working remotely and/or freelance (I do the last one). There is no way of stabilising one's disease without pacing, because for many of us autoimmunity has been provoked by having driven personalities. Even if it was something else, we all still need to rest and be careful.
Hi wiselyfair, like you also work in Finance and got so sick in my previous job that I looked for another job in finance but with less responsibilities. In my previous job I advanced to be a Finance Manager but I just found it was too stressful and despite my colleagues and boss knew about my condition of lupus, the workload was out of my control. In my current job in another company, I took a role with less responsibilities and no managing people and although it’s also demanding, by taking a role with less responsibilities, I feel I can handle more the workload. I also requested to reduce one day of work and from May I will be working only 4 days.
I was diagnosed with lupus in September 2017. And I just kept getting sicker and sicker. I spent the better part of the year in pain and a lot of it in bed.
Then a friend who is a rheumatologist recommended that I get on to the autoimmune protocol. It involves diet and lifestyle changes. Within six months, my pain had gone, my brain fog dissipated, and I have been able to reclaim my life.
This is the website of the medical researcher, who developed the protocol: thepaleomom.com/
I am very happy to talk over what these changes have done for me. In the meantime, I wish you the very best and I hope you find something that works for you.
Hi WiselyFair, that’s so hard. I completely relate to your story. I work as a healthcare professional and I love my job, but frequently struggle to give it everything it needs and deserves. I have also worked hard to get to where I am, and I’ve been in my chosen field for 20 years. I find working 8-hour days a challenge; I can only imagine what 12 hours must be like for you, and a fast-paced 12 hours at that!
Having a supportive manager helps, but it’s hard when colleagues can’t relate, and when the workplace culture is competitive and performance-based. It must be hard for you on the days when you are clearly in pain and no one notices or empathises! It can also be hard to cut ourselves any slack when we expect lots from ourselves.
I have made a few work/life balance choices over the years that has helped. The biggest decision was going part-time. (I don’t know if that’s an option for your role of type of work though!) I now work 4 days (sometimes this is too much) which is much better than full-time. I no longer work for places that expect evening work or unpaid overtime. If they ask me to work over, I request pay or TIL, or else I refuse. I just can’t sustain it anymore, and I tell them so.
The other thing that has helped, recently developed because of the pandemic, is the WFH option. I now work one day from home, and there are options for me to work more days from home when I am unwell. Just knowing this is an option is super helpful for me. Again, I don’t know if this is an option for you with the kind of work you do or the team in which you work, but most workplaces are now required to offer this flexibility.
If you are living with physical limitations, your workplace is required to make any and all adjustments to accommodate you. It might be worth looking into your rights in this situation. Addressing these issues with management and HR can be taxing though, so you would have to weigh up whether it is worth it. Sometimes it’s easier to fly under the radar. But sometimes it’s worth speaking up too. Good luck!
I am so sorry you are feeling so bad at the moment but let's see if all of us can help you here. I too have Lupus and adrenal insufficiency and a thyroid problem which is rather complex. I wonder what drugs you are on that might be causing your symptoms to be so severe - can you let us know. I found vitamins and minerals helped as the thyroid is heavily implicated in Lupus and it can help to keep the thyroid robust which in turn can help with the symptoms. Take care.
Sorry forgot to add - sometimes the symptoms we experience with Lupus are also as a result of deficiencies that are caused by the drugs we are taking i.e. low vitamin B etc. etc.
I just wanted to thank you all so much for taking my post seriously and answering in such helpful, caring ways. I am sorry it took me so long to reply, it’s been very hard lately and struggled with basic tasks, but believe me when I say that reading your messages helped me a lot. This community is a blessing.
I now feel a bit better, I got steroids twice and maxed out the hydroxychloroquine.
I talked to HR and OH. I also had to reiterate what I can and can’t do, and started putting some boundaries. This might have cost me opportunities in career advancement, but at this point I think I need to really focus on health first. And not feel guilty about it, which still is a challenge.
I picked up gentle yoga and seems to help a bit with morning stiffness.
Very warm thank you once again, I am grateful to this group.
So. I’ve just joined this forum and I am pleased I have. Mine is slightly unusual as I am a head teacher of a large secondary with a diagnosis of UCTD. I have some sicca symptoms such as very dry mouth and eyes. I get the usual fatigue and
For me, I get an attack on my left parotid gland which swells up. With a dry mouth and fatigue . I then cannot function. Whilst I am the “boss” o do feel guilty and my team are supportive. I’ve self referred to occupational health, and I leave work each day at 2pm.
My advice is to be confident, HR and occ health are there to support you. And what’s been said already is that you will have protections under the Equality Act. Be positive, how much I love the job, but my condition affects … all the best.
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Undifferentiated connective tissue disease.
MIXED CONNECTIVE TISSUE DISEASE 
Diagnosed with Connective Tissue Disease possibly Lupus
lupus and connective tissue pain??
