Imagine you’re at work. Maybe you’re running an errand. Perhaps you’re breastfeeding your baby.
And then your hair starts falling out.
In the case of former Eternal singer Kelle Bryan, she was on the set of Me and Mrs Jones and feeding her then baby son Regan, when her colleagues noticed she was losing her hair.
Instinct told her there could only be one cause: the 10-year remission from her disease was over. Her lupus was back.
Kelle’s lupus journey
Mum-of-2 Kelle has now opened up about her battle with lupus – and has revealed she didn’t even think she’d be able to carry children because of it.
She was diagnosed with the auto-immune disease in 2000. It’s said to affect around 50,000 people in the UK (and is most common in women of child-bearing age) but diagnosis is tricky, and for Kelle, took a long time: doctors thought at first she might have Hepatitis C, or HIV.
But once they determined what it was, as a result, she thought she might have something called ‘sticky blood syndrome’ (Antiphospholipid Syndrome) – which increases the chance of miscarriage and pre-eclampsia.
“I hadn’t really thought about children being an option,” she admits.
“So when I met my husband Jay, I said to him straight away we won’t be having children, I’m not able to, so obviously if you wanna get with me, you’re gonna have to take that on board.
“I actually said it to him… on our first date,” she laughs.
But after experiencing no symptoms for so long, and talking over the possible risks of pregnancy (including the ‘lupus butterfly’ across the baby’s face), she tested negative for sticky blood – and after a pregnancy she “loved every minute of”, she and Jay welcomed their healthy 1st child, Regan, who’s now 5.
When her hair fell out during filming the 2012 series, she says there’s only one word that came to mind. Understandably, it’s the word “sh*t”.
“Fortunately, my mum was on set with me, because I was breastfeeding she had to come with me to work… she just looked at me with that knowing look.
“A million and one things go through your head – am I gonna have to stop working? Am I gonna lose my role?
“I’m on set, right, with strangers, and they’re going to me “um, do you…?” – I could feel [they were] totally awkward.”
“But I’ve got a baby now – someone who is reliant upon me even to the point of milk. So, I [stopped] breastfeeding and went back to my specialist and he was like, ‘Yep, the [lupus] is back with a vengeance’. You need to start treatment immediately.”
Luckily, Kelle and her doctors were able to get the disease under control and that’s what drove her to go for baby no 2. After another trouble-free pregnancy, she welcomed a healthy baby girl, Kayori, in 2013.
Then while filming The Big Reunion in 2014 with her former Eternal bandmates – this time breastfeeding then 3-month-old Kayori during the shoot, she started to suffer debilitating symptoms.
“I started to get arthritic symptoms, and it escalated rapidly over about 48 hours.
“You can’t brush your teeth, you can’t wash your face – you know, normal stuff. My sight, my hearing, my movement, everything was deteriorating. I ended up not being able to speak.”
It wasn’t until Kelle had a seizure that doctors realized the lupus was also in her brain.
“When I came round from the seizure. I was here, and I was functioning, but I have no recollection,” she says. “I lost three days of my life.”
The road to recovery
The seizure meant Kelle had “psychological damage”, leaving her “limited physically and limited mentally”.
She had to re-learn how to read and write, and still struggles with short-term memory loss.
With 2 young children in tow, how did she balance the need to take care of herself and manage… everything else?
“I was fearful that they would take my children away because I was incapable of looking after them,” she confides. “But what my health visitor did was empower me as a mum.
“With all the psychological issues going on, my deepest, deepest fear was that one day I was gonna come home and my mum and dad were gonna go ‘they’ve taken the children’.
“She [the health visitor] would have someone else take the babies so she could focus on me… and put [me] in a position of support so I could manage to be a parent.”
Kelle also found herself in a situation no parent ever wants to be in: explaining to your child that you’re ill, that you can’t do what you used to, that things might be different…
But she’s put structures in place to make that easier, she says, with the help of her health visitor – like teaching her now 5 and 3-year-olds to climb out of the bath themselves, when she can’t carry them herself, using a special step system. They bought books about hospitals to help explain what was going on.
She also made it a point to take Regan with her to a chemotherapy treatment session.
“I took [him] with me, because I wanted him to see what happens,” she explains. “To see that it doesn’t hurt. ‘Look, it’s a needle, but mummy’s fine, see?’”
“You have to be as honest as you possibly can, otherwise they’ll be left in the dark, and not understanding what’s going on with mum.”
When asked if she can put into words how it feels to explain this stuff, most notably: the surgical mask she sometimes wears when her immune system is at its lowest, the fact an infection could kill her, to her kids.
She says simply: “I still can’t.”
Now, in 2016, she is sharing her story with others to help raise awareness of the illness – including through the power of social media.
Just a month ago, Kelle posted a picture of herself lying in a hospital bed before a brain scan.
Honestly, it’s not an easy image to look at, and it isn’t for her either, as she says:
“It took a long time to post it, maybe a week after it happened… but just because it makes me uncomfortable, that’s not a reason not to share.
“Because there is somebody out there going through the same thing I am.
Though surely now she’s staying focused on recovery and her health – she’d want to shy away from it all? Protect herself from the potential negative side of social media by closing off a little?
“If I’m going to be a patron for the St Thomas’ Lupus Trust, I have to be open about the pros, the cons, the good, the bad…” she says adamantly.
“I can’t let the fear of what people might think of me override the potential to help somebody.”
Kelle is a patron for the St Thomas’ Lupus Trust. Visit their website for more information.
Images: Twitter/Instagram/Kelle Bryan