LUPUS UK

Working with SLE

HI. When I first started to experience lupus in my early twenties (now 52) I had started on a teaching career in FE. I had done a PGCE and taught on a reduced hours contract and really enjoyed the job. I had to change tack though when I needed time off sick (despite the reduced hours) because I didn't feel comfortable about the impact of my absences on my students or colleagues. Nobody made me feel badly but I knew it wasn't right. I was able to change to freelance research and then shifted to a permanent Research job which allows me to work from home a lot. In 2011 my symptoms got worse and I became more and more aware of how if I had to do regular hours and was appraised on the work process rather than simply results I would not hold down my job. Worse still I couldn't hold down any job. Recently I tried to talk to my consultant about work. He heard the word 'work' and before I said anything more said airily...'yes you can work'. He seemed to think I was asking permission to work ...or for permission not to work when really I wanted advice about how best to deal with the problems that might stop me working. I found his response very unhelpful and wondered how much it was produced by the culture of trying to force people off benefits and into work. As I explained my very unusual job....think of it as similar to being a writer if you will....allows me to work whenever I can and so long as I meet output targets that is fine (and not special to me) but this is very rare and I can't imagine being able to hold down a job where I was having to take sick leave even ten percent of the time. This made me think that the airy 'you can work' response is technically correct some of the time but takes no account of the fact that to hold down a 'normal' job you need to be regularly fit for regular hours of work which is a very different thing. I think more needs to be done to change the narrow understanding that now seems to dominate the thinking of professionals associated with assessments of fitness to work. I am sure a lot of people are suffering as a result of the current system and lack of understanding. I wondered what you had all experienced in this regard?

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This is a difficult area and the Return to work not has not helped because most doctors haven’t found the time to formulate a plan with patient and employee. If they did, over time they would probably see their work load reduce.

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Hi Kevin

I took a look at the leaflet and actually I have looked before but it was good to read through it again - thanks.

What I feel is not really adequately understood - or covered in the literature - is the extent to which the erratic nature of the symptoms of many of us with lupus interferes with any job that requires regular hours. I don't mean erratic as in a three month flare and then a return to business as usual which I suppose a workplace might cope with periodically..... if it didn't happen too often. I mean irregular but frequent clusters of days when work wasn't possible - not least due to the cumulative toll of regular hours on many of us. The kind of thing that looks like irresponsibility ...a day off this week and two the next, then ok for a week and then another two days off then ok for three weeks and a week off etc etc. then on top of that a flare for three months and so on. I think this would be the reality for me if I wasn't in an output-related job. My experience,and it seems the experience of others who have responded to the original post,indicates that many of us can work (and want to) but only if the terms are right which I think may be more about working from home and being judged on output rather than hours than it is about aids to assist with work-related activities or reduced overall output or hours.

I don't rely on benefits (luckily) but the rules for benefit need to take account of the reality of lupus (and similar conditions). That reality is that there are very few jobs that can offer the flexibility and autonomy that we need to be able to work. This makes work for many people impossible because although they might be able to do the available jobs (requiring attendance and regular hours) in fits and starts employers wont accept this (not unreasonably). Fitness for work assessments that only take account of what physical activities you can do on a one-off basis do not provide an accurate picture of what sustained work a person with lupus can do. This element of the condition needs to be properly understood and taken account of it seems to me.

I would love to see organisations such as Lupus UK taking up the mantle to try to educate the government and employers about these aspects of the challenges of work. Most people get a lot of rewards from work (not least financial but also in terms of identity) and we all want to work but if we can't then we don't want to be prevented from taking ill-health retirement, or receiving our due benefits, because of this kind of abject lack of understanding vis a vis the real nature of the condition and its impact n our ability to function (in and out of work) on a day to day basis.

Perhaps the Lupus UK moderator might take this up in some way?

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Hi driven,

What you are describing is a common problem for people with lupus and a number of other fluctuating conditions. As you say, many aspects of society do not currently have the flexibility to facilitate people like yourself to work in a way that would suit your individual needs.

LUPUS UK is very active in making policymakers aware of the problems that people with lupus experience in being able to work. Last year we submitted a response to the government's green paper on work, health and disability - lupusuk.org.uk/green-paper-... This is now starting to produce further action and discussion groups with government.

We're also working with a group of researchers who are producing a report about lupus and employment which will be used for lobbying policymakers. You will be able to read about the next stage of this research on this site within the next couple of days.

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Great. Will look forward to the report. Thanks.

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The following is useful

lupusuk.org.uk/wp-content/u...

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Hi Driven, thank you for a very interesting post. I worked as a medical receptionist and loved it, unfortunately I've never been fit to return to work in over 20 years and I really miss it. The days I'm feeling ok I'd dearly love to dress myself up, put on the makeup and heels and go to work but the reality is 3 hours later I could be overtaken by impossible fatigue, muscle pains or an excruciating migraine. I've tried voluntary work but once again you have to be reliable and I'm simply not!

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I can very much relate to this. Thanks for the post.

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Thank you for writing such a thoughtful post which reflects so many of the problems I have encountered trying (and failing) to establish any kind of career. Much like you - I will be 52 in about three months - I also took my degree (which was tough enough at the time) and have also (almost) got a PGCE .... I completed all the university part but ended up in hospital during my final teaching practice - rescheduled it and got ill again. The university were not at all helpful and so i just have a record of only partially completing it unfortunately.

As far as work has been concerned I have just lurched from one thing to another and ended up spending a long time as a stay at home mother primarily because of having difficulties actually having children and then being unwell.

I took a twelve month contract working for a charity almost two years ago and no concessions were made at all for my health condition and I found the whole experience very difficult. I have only received child related benefits and really would like to work but just don't know what I could realistically do where my health won't be adversely affected. I know that I would not be sufficiently incapacitated to receive any disability benefits.

It really is a difficult subject and having once been told by a job centre that 'we don't deal with people like you' it's hard to know where to go for any help.

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Our experiences sound so similar except that I avoided having children (largely because I was diagnosed early and was afraid of how things would pan out with lupus) and I managed to stay well enough for long enough to do my teaching practices. When one of the sites of the practice offered me a job I took it on a reduced hours contract and then had to reduce again and finally came to the conclusion that the commitment required from teachers wasn't compatible with lupus.

I am really sorry that your University was unhelpful and also that the job centre are so hopeless. It must be the experience of so many people. i dont know if there is any chance of success but I do feel we all need to change this somehow or other. I suppose educating people is a start and this probably requires the erratic impact of the illness (even when being relatively 'quiet') to be placed higher up the agenda in educational and information leaflets and publications.

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This post strikes a powerful cord for me too. I’ve been a self employed fine artist since graduating with an MA in 1988. I’m now about to turn 55 and am hoping to undertake a practice led PhD relating to visualising invisible diseases. I think I’ve been an autoimmuner all my life and always struggled with very low energy levels - my late mum always said I was profoundly lazy!

And I may be physically lazy but I’m not intellectually lazy. If I commit to something then I commit fully, with everything I’ve got, no matter how lousy I feel.

Over the past six years I’ve been volunteering for charities and the NHS in quite a high powered capacity. The price has invariably been high, and this includes my first rheumatologist writing in his clinical letter “she claims to be severely affected by fatigue - but I have had occasion to meet her in a volunteering capacity recently and I do hope she is finding these roles she undertakes enjoyable and rewarding?”. I spat nails for weeks after reading this and my GPs always checked letters before giving me copies from then on!

Nowadays, although we are pretty hard up, I know I couldn’t do a proper job because I’d have to stay awake or stand up for too long and I’d be off sick all the time which wouldn’t be fair.

But as an artist and researcher I can work on my own terms in the privacy of my bed or in the studio. I have an ancient recliner in my studio that I picked up second hand that I go to sleep on with my dogs when the knockout fatigue hits. I’m so lucky to be able to suit myself a lot of the time in terms of work and rest.

However I have a PIP triubunal pending and haven’t been able to face mentioning work or benefits to any of my medical team to date. But I’m at least learning how to wake some of them up from their compassion fatigue/ prejudices by describing a few examples of things I can’t do anymore - from turning my head to look for cars and bikes when crossing roads - standing still/ weight bearing in queues or at work functions and swallowing foods while out with friends.

Lately I have describe chairing an event and not being able to risk taking my essential laxative meds, risking diverticula disease or fecal impaction - and then during the lunch break having to lie down across several chairs in a corner of a conference hall to snatch some rest or sleep or because I feel so dizzy or faint. Having to ask people to hold my arm to cross roads, having to carry a fold out seat stick everywhere. I describe the way my finger tips are numb so I have to use my fingers like a stylus as I can no longer feel the touch screen. Typing takes ages now. My voice is too erratic for voice recognition software. Hearing loss in both ears means I have constant Tinnitus and over sensitivity to sounds. Not being able to eat out because of my swallowing issues, brain fog making calculating tasks impossible, having to carry eye drops and saliva pastels with me all the time as well as spare pants and prescription shades for UV light sensitivity and bottle of water to sip at. Getting lost in corridors without signage, patterned floors, being addled by crowds.

Providing these simple flat descriptions of the impact on my daily life seems help make a connection with these medical people - I can see it in their eyes.

Previously I had always felt that it was important to appear stoical and jolly and make the odd joke with doctors so as not too seem overly anxious or as if I were exaggerating my symptoms. In other words I’m very proud!

But pride comes before a fall and this behaviour is changing of necessity. It is my feeling that they need to be able to imagine how it feels to live in our shoes - and this sometimes requires us looking them in the eyes and spelling out the nitty gritty in relation to basic human function most people take for granted.

Driven thanks for your very interesting post. It’s helped me to appreciate what I can still do rather than feeling sad about what I can’t. X

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Thanks very much for the reply Twitchy.

I like the image of you in your studio with your dogs. I do find animals very important in coping with all this stuff. Good luck with the PhD.

I hope that the limited ability of people to understand doesn't lead to an injustice in relation to the outcome of your tribunal! You sound as if you are learning how to express what it is like to live with lupus and similar conditions. Like you I find it very difficult to actually talk about my experience of my actual symptoms with doctors and medics or colleagues/bosses. I suppose I am too proud too....dont like having a weakness (or several hundred) never mind admitting to it....and it does feel like weakness to say 'I can't do that thing that everyone else can do' even if it really shouldn't!

good luck again and thanks for the post.

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You’re welcome. As you may know I have Sjögren’s rather than Lupus but I believe fatigue is an extremely dominating part of Sjögren’s so we have plenty in common. info.sjogrens.org/conquerin...

I think the central horror of navigating the disability benefits system for many of us is that it’s so counterintuitive to be made to focus on and explain the negative impact of pain and suffering on our lives in order to be taken seriously. As a naturally sanguine type I find I am having to learn to do this the very hard way. X

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Thanks driven

Your feedback is very helpful and reflects the thoughts of many.

Apart from the awareness raising, Lupus nurses and research; the number one issue raised by people with Lupus is fatigue and obviously this has direct implications on work.

We continue to raise these issues along with the other autoimmune charities.

With your permission I would like to share your comments with the other Trustees?

Best wishes

Kevin

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Very happy for you to do so. Many thanks.

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