A trip to Australia marked a turning point for local Debbie Steel as it set her on the path to a diagnosis for Systemic Lupus Erythematosus (SLE), then aged 31.
She believes her time abroad caused the condition – an autoimmune disease that causes your immune system to mistakenly attack healthy tissues and organs – to flare-up due to the increased exposure to the sun, triggering photosensitivity and a reaction in her body.
Debbie’s initial indicator of Lupus was a pain in her lungs, but a dramatic drop in her red blood cells prompted doctors to intervene.
Having never heard of Lupus before, the sudden diagnosis left her confused and headed to a specialist in New South Wales to learn more.
Debbie said: “People hear the words and give up but, you have to own it.”
It didn’t stop Debbie as after diagnosis she continued her travels onto Asia.
Now in her 60s, she reflects on the noticeable difference in the awareness of the condition, feeling that Lupus was better recognised in Australia than the UK, where a diagnosis can take up to seven years.
Due to her experience, Debbie dedicates some of her later life to bringing the condition to the foreground in UK having set up stalls in hospitals and speaking to student doctors to develop their understanding.
Debbie said: “It’s working, more people know about it.”
Along with her friend, Tamsin Williams, 47, they ran Dorset Lupus Group offering support and understanding for people living with the condition hoping to share their positive outlook with others.
Tamsin was diagnosed at 16 and her experience living with Lupus from such a young age highlights the realities for those living with an invisible disability.
She said: “They look at you asking, ‘Really you’ve got it?’, ‘You don’t look like you have it?’ and there you go,” many people tend to answer their own question.
With pages and pages of symptoms, Lupus doesn’t look the same in everyone and isn’t obvious to the naked eye.
Tamsin explained that a bad day for her and others with Lupus is not what most would consider a bad day.
Tamsin said: “For us it is an overwhelming fatigue that feels like you’ve been lifting 30kg in the gym.”
The exhaustion can be difficult to explain to someone who has never experienced it.
Speaking ahead of Invisible Disabilities Week (October 18 to October 24), Debbie and Tamsin’s experiences underline the importance of educating a wider community about Lupus to help avoid damaging misconceptions.
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