Working with Type 1 Diabetes and Lupus

“Health can change in a matter of minutes; I live on the edge, planning for the unplannable”

Julia is a research scientist at the Francis Crick Institute. She is currently working in the field of protein crystallography and its applications in cancer and diabetes treatment. Before becoming a biophysicist, Julia was a senior research scientist for a major pharmaceutical company.

Julia’s experience piece is in the third person by choice, written by the editor rather than herself, as her dyslexia prevents her from writing as easily as she otherwise would.

In addition to dyslexia, Julia has type 1 diabetes and lupus (along with various other autoimmune conditions – it is apparently very easy to develop several once you have one or two).

The weekend she was due to speak to the editor over the phone, she had struggled to sleep due to having to manage work stress-related blood glucose spikes. Waking up every few hours to test blood glucose levels and administer insulin is one of the many challenges that result from working long hours while living with the disabilities that Julia does.

Even more impressive than the long hours in spite of her diabetes and lupus-related fatigue, joint pain and other symptoms is the calibre of work that Julia did pre-diagnoses and continues to do now.

Publishing numerous research papers, interviews for Nature and playing an instrumental role in the disability network at the Crick Institute are just some examples of Julia’s work-based achievements.

She spoke about how her diabetes is a particularly sensitive type (having developed it following a rare immune reaction during pregnancy) and something as inconsequential for the average person as a meeting running slightly over can be dangerous for her blood sugar levels.

In her experience, despite colleagues’ and managers’ best efforts, leaving a meeting that is dragging on can still be awkward – and you run the risk of missing crucial discussion even if no one says they mind you excusing yourself.

Julia also pointed out that it was especially difficult navigating the challenges of motherhood and a new diagnosis and that she sometimes had difficulty distinguishing between the challenges of each situation. This is an indicator that women with disabilities can have additional obstacles to surmount, compared to their male counterparts.

She gave the example of going for promotions: she would end up taking on the responsibilities of a more senior position, but without formally applying for the new role. She cited fear of not being able to manage the workload as a result of her disability (and existing responsibilities as a working mother) as the reason for holding back. This is likely a very common issue among people with disabilities in work, especially mothers – as well as mothers without a disability.

Julia shared an anecdote from the time of her diabetes diagnosis, when her manager lamented that she “had had such a great career ahead of [her]”. The emphasis on the past tense and the end that disability had been assumed to bring to Julia’s success is evident and symptomatic of ingrained bias against people with disabilities – who are, as proven by Julia, eminently capable in spite of their conditions.

It can be inferred from Julia’s continued professional excellence that this was an erroneous assumption on the part of her then-manager, but she admitted how the diagnosis along with its negative reception by some who were supposed to be, and trying to be, supportive, left her shaken and reluctant to discuss adjustments.

Julia explained how now, attitudes among employers towards disabilities have largely improved – praising her last manager at the Crick in particular – as has medicine. Her insulin pump, along with Access to Work (and this manager), have facilitated her success. Although she hastened to add that Access to Work could still be better publicised so that more people benefit from the scheme.

This being said, there are still days when she cannot get home from work by herself and has to have her husband come and collect her. (Lupus is characterised by unpredictable fatigue and while steroid treatment has helped, she will continue to experience debilitating flares).

It is the chronic nature of her disabilities that Julia said contributed to a sense of loss and grief that she felt – and sometimes still feels. She can still work – and, obviously, incredibly well – but relatively simple pursuits such as sponsored walks and the guarantee that she will be able to commute to work every day, are out of reach.

“Health can change in a matter of minutes; I live on the edge, planning for the unplannable”. If this is what Julia herself experiences, it is perhaps not too surprising that discrimination from employers based on fear and a lack of understanding occurs – elements of fear and incomprehension characterise life for the person with the disability too.

Adapting to her conditions, for Julia, has also meant, in the past, leaving research and laboratory work, for more data-focused work which was possible to do from home when flares necessitated this. But, back in research science now, with the ability to work remotely some of the time, she has clearly mastered adapting her life and work to accommodate her disabilities, without letting this be to the detriment of her professional success.

A short interview with Julia on working in her field with disabilities can be found here and a podcast interview, here.

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