Learning to live and work with Lupus: a hidden disability
Published: 3 March 2022
This was published when the organisation was the Royal Pharmaceutical Society.
I was diagnosed with Lupus in 2012 after my health had been deteriorating for 1-2 years. Before this I had been a bit of a high achiever, determined to be successful despite the racial discrimination I faced my whole life.
I found my diagnosis difficult but also a relief when it finally came. In my late 20s I had experienced chronic fatigue and pain despite what I did or how much I rested. But it wasn’t until I started breaking out in skin lesions that my GP referred me to firstly dermatology then rheumatology. Even then the diagnosis didn’t happen overnight.
My experience of lupus
I had first heard of Lupus on the hit TV series House, and it always sounded like the type of diagnosis everyone dreaded. So when I got diagnosed one of the first things I did was to educate myself and I found www.lupusuk.org.uk an excellent resource. Even health professionals don’t fully understand Lupus in my experience and very quickly I had to become an ‘expert patient.’ In short, I realised it was an autoimmune disease, unknown cause, a long-term health condition with no known cure.
When I was diagnosed lupus was already affecting my skin and joints but because it was so aggressive there was a worry it would affect my internal organs soon. I was initiated on triple immunosuppressant therapy which quickly became quite toxic for me and I had to leave salaried work for three years.
Rehab
It took significant time for me to recover from my toxic therapy and learn to manage the various symptoms: Raynaud’s phenomenon, lupus arthritis, pain, Sjogren’s syndrome, light sensitivity, brain fog and severe skin lesions. But I motivated myself to be proactive and self-manage my condition to the best of my ability.
Work adjustments
I realised colleagues and employers found it difficult to understand the nature of Lupus. Since it’s a long-term fluctuating illness which can adversely affect daily life, it is regarded as a disability under the Equality Act 2010. This means I should be legally protected against discrimination, but whilst some reasonable adjustments such as a telephone headset, ergonomic keyboard and mouse were provided, a more supportive chair was not.
Previous employers were resistant to adjust my working hours and duties and declined my request for hybrid work model, which would have allowed me to work remotely when I was experiencing an infrequent flare which made it difficult for me to get out of bed.
I had to overcome feeling like a failure when I got my diagnosis. I had got where I was in life through my own merit, but even then I had felt I had to work harder than my white British colleagues to be seen as equal to them. Despite my accomplishments it is an uphill struggle to achieve a leadership position. It is hard to be taken seriously but I and many others continue to try every day and are determined to achieve!
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