I am often asked for the origin story of my Systemic Lupus Erythematosus (SLE or Lupus). It is hard for some to imagine how a life such as mine could have changed so much, so ‘quickly’ for an unknown reason. I am often asked by people I haven’t seen for a period of time how and why these things have happened to me. Here I hope to share to the wider community an understanding of my illness.
There is no reason for lupus.
Just as there is no reason for many other illnesses. We can pretend that the origin is in our lineage, but this is a guess at best. Lupus and many other autoimmune illnesses do not seem to be hereditary. This means they do not pass down the line through genes. Sure, I have been able to find some distant relatives that have been able to provide me with their medical history and, yes, their heart problem was documented as being *somewhat* related to a lupus indicator in their bloodstream.
But it isn’t lupus. It’s never lupus.
There is often not cause for lupus. Many people talk of the use of harsh cleaning chemicals and the antibiotics in our meats and vegetables as being the origin. I grew up in the small farming community of Lake Grace with relatives on farms close by. Much of our meat came from them or from my father’s fishing trips. Vegetables came from the local grocery store. Australia does have chemical fertilisers and bug sprays, I’m not naïve. But we don’t have vast sprayings of dangerous chemicals in the quantities and extreme of larger countries such as the United States of America. Nevertheless, some of our fruit was picked locally and came straight to our kitchen.
Chemicals didn’t make it happen.
Another benefit of being in a rural area was the size of our property. We had the luxury of a big backyard. Big enough for a big water tank. Since childhood, all my drinking water came from the clouds. There were no chemicals keeping it safe for consumption simply because there was no need in such a quantity, small enough but large enough for one family. My parents spent a lot of time outdoors, so we had to as well. How could you not in such an idyllic and picturesque town? There was very little pollution in the air, few cars driving around in fact, and no chemicals were used on our garden so they cannot have been a factor in the origin.
Fertiliser was poo. Enough said there.
My mother rarely cleaned with chemicals. Bleach and ammonia did enter into the equation of course. Those who have raise children can attest to the need for a hard-line product on the odd occasion. But wiping down bench tops, cleaning windows, dusting and mopping could be done very practically without resorting the big guns. An air conditioning and heating unit was not installed in our family home until five years after I had moved out. Even then it was in the lounge room and would never have reached my bedroom. The weather in Lake Grace is more bearable than in places closer to the coast, perhaps.
Environmental factors didn’t do it.
Being one with a hyperactive immune system (that’s SLE for you) I rarely, if ever, got sick. My parents cannot recall an instance of my contracting a full-blown gastrointestinal virus, or a strong case of the flu. Not even many colds. I would bypass them and go straight to ear infections, lower abdominal bleeding, bad eyesight or strange skin outbreaks. I was often at the doctors, yet there was rarely much they could do to help me.
Drugs weren’t a factor.
When my mother was pregnant with me she can recall not taking a liking to lemonade or other ‘fizzy drinks’. Nor were potato chips a big enticement during this phase of her life. She didn’t incubate a big fast food favourite. The preferences and awareness of foods has exploded in recent times, I believe with the internet mostly. Yet twenty to thirty years ago both my parents were set on eating two fruit and five vegetables with their meat, every day. They would sit down to a healthy home cooked meal of ‘meat and two veg’ every evening before retiring to the living room for television. On weekends they would play sports and partake in one or two simple drinks of alcohol, but they weren’t smokers or party things. They were popular in town, but they were young and played sport. How can you not be?
My parents lived healthy lives, but not to excess.
The way you describe an illness with no known cause or origin is to say it is ‘idiopathic’. I was once diagnosed with Idiopathic Thrombocytopenic Purpura, (Unknown Platelet-Coagulating Bruises). Now we can say it is likely a Lupus Complication (meaning occurs as a result of the SLE) instead of Idiopathic. But you can also see my Systemic Lupus Erythematosus is Idiopathic. My Rheumatoid Arthritis is likely a Lupus Complication, and my Lupus Cerebritis is most certainly a Lupus Complication.
But as to the origin of my Lupus? Why am I sick?
I am just one of the lucky ones.