My first lupus flare two years ago landed me in hospital with a variety of unusual symptoms that doctors diagnosed as viral meningitis. It was the first time I had experienced anything like it, and as a 31 year old woman focussed on my career, it was a shock. It took another flare a year later to attribute my symptoms to lupus and I was able to start working towards properly managing the illness.
I am still in the early stages of my journey, but I know my experiences so far will inform the way I manage lupus in the future. Tracking symptoms has helped me understand how lupus affects me and given me a greater sense of control. One of the main challenges is the not knowing when a flare will happen. This can be quite scary as a lupus flare can escalate within hours. Now I know to look out for things like muscle aches, fever, headaches or a rash as indicators of an approaching flare.
After my diagnosis, I attended a Lupus WA support group meeting. Being able to share experiences and meet people who have been living with lupus for many years was incredibly helpful for me, both practically and emotionally.
If you have lupus or think you have it — be informed. Be smart with what you read on the internet and find reputable sites like The Resource Centre on Lupus (resources.lupus.org) or cited journal articles. One of the most useful parts about doing your own research is being able to compile a list of questions for your doctor.
I am now in the process of trialling treatment for a recent diagnosis of lupus nephritis.
Having the power to manage lupus through knowledge, tracking my health and trusting my medical team makes me feel more in control of something that can be very unpredictable. It also makes me more emotionally resilient which keeps me positive about the future.
Jules
