Page 7 - N&V Winter 2019

Fluctuation, invisibility, fatigue - the barriers to maintaining

employment in SLE: results from an online survey

sara booth, elizabeth Price, elizabeth walker.
https://journals.sagepub.com/doi/10.1177/0961203318808593

I’m really pleased to tell everyone that this research is now published in the Lupus journal in
December 2018. This journal is read by most physicians who treat SLE.

Thank you to everyone in the group who than simple tiredness - is a feeling that is demoralising it was to have an illness that
took part in the survey. We had a not understood by many co-workers - or was so little understood and therefore for
wonderful response in a very short time even family, and again contributes to which there was relatively little support. I
from people all over the UK. The extra people losing their jobs or feeling honour- have also presented it at the University of
information that participants (i.e. those who bound to stop working. As lupus is invisible, Cambridge to a mixed audience of people
took part in the survey) gave us as what is and indeed it is clear that many people from different professions and jobs in the
called ‘free text’ (writing down exactly look healthy even when they feel very clinical school. It obviously struck a chord
what they wanted to say) was very unwell, many colleagues seem to imply that with a number of people - some of whom
detailed and very heartfelt. It was very the individual with lupus must be ‘putting it spoke at the meeting - relating their
moving to read. These subjects - on’ perhaps to get out of difficult work. experiences - and some talked to the
employment and benefits - are obviously Sometimes this feeling that others do not organiser afterwards - understandably
very important to people with lupus. We believe them may simply be a feeling that finding it too difficult to say something in
wrote one paper on working with lupus comes from the person with lupus public. I was particularly pleased that some
(title at the top of this article, on which I themselves - it was clear that lupus has a members of the human resources/personnel
took the lead), and one on benefits which I detrimental effect on people’s confidence departments were there and said it helped
will not discuss here. and self-belief. It is self-evident that them to understand more about fluctuating
The essence of the paper on employment is someone attending work irregularly can illness. I have presented the work as
in the title - the fact that lupus fluctuates make getting some types of work done to posters at a lupus meeting in San Francisco.
unpredictably makes working life difficult. a high standard difficult. The best outcomes I’ll report back - like all people with lupus
Many colleagues/managers could not were when people could work flexibly or I’m quite reluctant to plan too far ahead or
understand how even do a very little work and receive rely on managing to keep to all my plans.
some benefits. Another paper on the difficulties that
It is very clear that appropriate people with lupus have with claiming
employment is good for individual’s health benefits has been submitted (with input
and that many people who have to leave from all of us) to a social science journal.
work end up - as one person said - living Elizabeth Walker (of Hull University) is first
lives of ‘poverty and isolation.’ Others were author (i.e. took responsibility for writing)
very worried or felt very guilty, about on this paper - it may be some months
relying on their partner’s or parents’ before we hear about that one. Apparently
income and very frightened about what social science journals take a very long
would happen in the future. Others had time before they let you know if they are
had to leave work even when they had going to publish your paper.
understanding employers, and felt the loss The paper is published as ‘open access’
keenly. Do read the paper to hear what that means it can be shared freely without
others with lupus are saying about trying to asking for permission from the copyright
stay in work whilst living with lupus. holder. Do pass it round to any you know
I have also talked about the research at with lupus or perhaps someone with
various meetings. In February I presented it another fluctuating illness.
to the Trustees and members of the https://journals.sagepub.com/doi/10.117
National Council of LUPUS UK. The council 7/0961203318808593
is made up of members from across the I do hope we will be able to more research
country (Lara and I went to represent the in the future and we are actively looking
someone could be Cambridge group). When I had finished for sources of funding but this may take
well one day and feel very unwell the next talking someone said that I had presented some time.
and be unable to work. Fatigue - which as ‘the story of my life.’ There were lots of
people said is so much more debilitating questions and many people who said how Sara Booth

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luPus uK NEWS & VIEWS SUMMER 2019