In many ways, I am a lot like Kris Jenner; we’re both clinging desperately to youth (she more successfully than I), and we are both more than happy to monetise our family in every way possible (again, she more successfully than I). When it was announced that her daughter Kim Kardashian might have lupus, I thought, this is a sign – I’m going to be Ireland’s Kris Jenner. It was a sign that book deals, TV spin-offs and my own skincare range would be just around the corner, because I also have a daughter with lupus. This was going to be my moment, when I get to tell the world about how great a parent I am, oh god, I might win some sort of award, there might even be a cheque or a slot on the Late Late. Of course, a few days after the news broke that Kim had been diagnosed as having lupus antibodies, she was diagnosed with not having lupus at all, but psoriatic arthritis. So no Hallmark Channel adaptation of my memoir, Ireland’s Most Put-Upon Dad – The Bill Linnane Story. Ah well.
I was glad for Kim, because she is put-upon enough herself being married to Kanye, who seems like he wouldn’t be much use around the house, designing shoes when he should be helping to look for the Sudocrem while someone else pins down a wriggling toddler with a raw backside. The last thing Kim needs is the many challenges of lupus. My daughter’s condition, however, is never going away, and I long ago gave up on the notion that it might be a misdiagnosis, as lupus is so hard to diagnose that by the time the experts have made the call, they have explored every other option.
I, like a lot of people, had never heard of it until a consultant in Crumlin was telling me all about it one morning in an outpatients clinic. I thought we were there to be discharged, but four years on from that diagnosis, we are still in treatment and will be for the foreseeable. But while I had never heard of it, lupus isn’t as rare as you would think: It is one of those conditions that seems rare until you start talking about it and people say, oh, my sister in law has that, or my grandmother had that, or my friend was just diagnosed with that (it affects more women than men). One person did ask if it was something to do with werewolves, but I think they were mostly joking. Another person helpfully asked if it was possibly triggered by a vaccine, which I initially thought was a joke, but it soon became clear that it wasn’t. I had to explain that no, it wasn’t caused by a vaccine (they prevent diseases, not cause them, obvs), it wasn’t that she was bitten by a werewolf, it was just one of those things that comes out of the blue. My wife and I also felt like there should be someone or something to blame – why her? Why our family? But there is no why, and when something like this arrives on your door, you just have to deal with it and try to maintain perspective. It would be great if she didn’t have this, but there are much, much worse things out there – syndromes and diseases and conditions that shorten lives and destroy quality of life.
Lupus, with its effects on memory, cognition, mood, joint pain, skin, hair loss, and kidneys, is not the sort of thing anyone would sign up for, but it is manageable. Flare-ups come and go, medication ebbs and flows but will most likely be a part of her life forever. No amount of awareness raising by a celebrity diagnosis will change that, just as Lady Gaga’s 2016 album Joanne – named after her aunt who died of lupus aged 19 – didn’t make any material difference to the race for a cure, or to our lives.
Kim Kardashian’s near-miss with lupus was probably for the best – if she had it, everyone would want it, butterfly skin rashes would become de rigeur, and everyone would be trying to get infused with Rituximab, sher we wouldn’t be able to get a bed in the local infusion unit at all. It’s for the best, and anyway, Kim has suffered enough after being saddled with Kanye Syndrome, and I’m not sure I could handle the media spotlight being shone on us, nor could I maintain Kris Jenner’s chipper tone whilst cameramen from E! film my filthy house and screaming kids. We, like any other family, mosey on with our various challenges and triumphs, with little fanfare, where the only true reward is seeing your kids grow to be happy and relatively healthy.