10 May is World Lupus Day

Celebrating surviving thriving (revised)

I was diagnosed with lupus (SLE, or Systemic Lupus Erythematosus) in October 1972 at the age of 24 years after a miscarriage, confirmed soon after when I broke out in a rash on my cheeks when going in the sun—classic indications of the disease. I’m sharing my story here to raise the profile of lupus, which is still largely invisible.

Lupus is an autoimmune disease that, historically, has been hard to diagnose because it can be expressed in many different ways. However, there are now better and more tests, in addition to clinical symptoms, that have made it easier to detect. It affects mainly women, especially those who are Black American, Hispanic and Asian. I’m White (Anglo-Scottish) but my early years were spent in Borneo and Singapore. Perhaps that environment may have been a trigger? The reader can find a check list of signs and symptoms at https://worldlupusday.org/wp-content/uploads/2020/04/wld-2020-symptoms-checklist.pdf.  

Soon after diagnosis, when my doctor had been generally non-committal apart from saying it was a serious disease, I read a fiction book where a young woman died of lupus. In shock already from the miscarriage and my husband’s decision to leave our marriage because ‘he didn’t love me,’ and hadn’t for quite some time, while keeping it secret by thinking ‘having a baby might help,’ I kept my own secret, too. Using magical thinking, I told no-one about the book that had scared me, I thought that to speak about it could make it happen. Denial had become an automatic reaction to feeling out of control.

Four weeks later, I had a deep vein thrombosis that the doctors couldn’t dissolve with heparin. This mobilised me to Leap into a Future of be-ing (though I didn’t call it that until I read Mary Daly much later). Unable to articulate my inner turmoil, I realised I had to leave my sleep- walking state of the ‘living dead’. I applied for a Science degree at university, despite having no confidence I could do it or even deserved it. It was just something I had put off until after I had had my family, and now an opportunity to be seized, a door that had swung open hard enough to knock me into another reality. The Whitlam government had made it possible with newly introduced fee-free tuition and even a small fortnightly allowance to support those of us ‘mature age students, on a low income or otherwise disadvantaged—the silver lining of Be-ing I needed to guide me through the lupus fog.

My lupus has been generally controll

ed with prednisolone (10 mg per day) and azathioprine (50 mg per day). I also take warfarin daily that, combined with prednisolone, has made my skin fragile. I am pretty well permanently marked with bruises on my arms (and healed abscess sores on my lower legs) but can’t take the alternative blood thinner that’s easier to manage because it doesn’t work on the antiphospholipid antibody that causes blood clots. And I won the lottery of having all four forms of the antibody so there’s no way out. I was taken off plaquenil several years ago after I developed macular degeneration that led to hemorrhage and retinal detachment in my left eye. I now have only partial vision in that eye, where the surgeon had removed the lens to operate and then complications meant he couldn’t replace it as he’d initially intended.

I experienced a lupus flare mid-2023 and was put on mycophenolate then myfortic, but they triggered my IBS from multiple food chemical sensitivities. So, instead, my immunologist has begun increasing my azathioprine dose. Unfortunately, it has an unwanted effect of causing skin cancers (squamous cell cancer) that aren’t life threatening but can be disfiguring if not removed early enough. I have a regular appointment with my dermatologist and the next one is on Monday, where I think she’ll be removing four lesions that have recently sprung up on my forehead. I’ll disappear soon if doctors continue to slice and dice me! I’ll also see my immunologist later that day and still hope he can find an alternative drug that I can tolerate.

I’ve been diagnosed with a complexity of

illnesses associated with lupus (and with old age), including heart failure, and now an artificial aortic valve, pulmonary hypertension, osteoporosis, asthma, Sjogren’s with blepharitis, peripheral neuropathy and balance problems. There are other lesser condition that I won’t bore you with here. But my dance with medicine has successully extended my life expectations enormously

My treatment regime also comprises morning meditation and a daily 30 minute walk (when I’m willing) and I love my new ‘seniors’ gym routine of one hour three times per week. Lastly, my writing here and my online political activism, plus maintaining the CoAL website (coal.org.au), keep me on course, be-ing in reality and connecting to people and ideas. I’ve given notice of retiring as the Public Officer for CoAL and am looking forward to handing over to a woman in South Australia. Then I can take another Leap into writing that doesn’t focus on trying to convince Labor parliamentarians to keep our state laws free from gender identity ideology—a thankless task. There’s just one more letter writing campaign to go before I can hand over.

Thanks for reading this. If you have, or have had, lupus, I’d love to hear from you. Do you want to read more about this topic? I actually have a draft memoir that covers my lupus story and what led up to it. Perhaps I could serialise a polished version here or on another Substack? Then there’s my story about claiming my lesbian sexuality. That can wait for another day. Your suggestions and other comments are welcome.