The chronic condition that has left Jessica a relative recluse – 9Honey

On paper Jessica Livingstone has a perfect life. She has a good job, a partner who loves her and while her choice of pets - chickens - is unusual, but chooks can be the most affectionate pets and to Jessica, 25, they are family.

Even her partner has become used to the feathered friends walking into the couple's home and jumping on Jessica for a cuddle.

But Jessica's life is anything but perfect. For as long as she can remember Jessica has suffered from debilitating eczema and a bone growth disorder that sometimes sees her scratch her skin raw.

"I remember my mother telling me when I was born I was purple for about three or four days," the Queensland woman tells 9Honey.

The purple pigment started to fade but Jessica's mother was told to keep an eye out for any other skin issues and it wasn't long before they presented themselves.

Eczema is more than just itchy, flaky skin.

"It messes around with everything," Jessica explains. "It messes around with your mental health and your day-to-day life. You don't feel like leaving the house because everyone stares at you. I can't war a bra because it is too uncomfortable, especially when I have rashes so I don't want to leave the house."

Even having to wear a face mask during the coronavirus pandemic has proved challenging for her sensitive skin. Thankfully she works outdoors as a heavy machine operator so doesn't typically have to wear a face mask on the job.

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"Also I get no sleep," she continues. "As soon as I get a rash my body temperature flares. I go from hot to cold to hot constantly. Some mornings I wake up in agony because I have spent the whole night scratching in my sleep, tearing up my body."

It's hard for Jessica to decide which is worse for her condition - summer or winter.

"During summer I scratch and sweat and my body temperature is high," she says. "So the scratching is continuous. In winter my skin is so dry no matter what I do, I can't keep on top of it. Wet wraps, lotion, it's never enough."

Her school days felt like torture.

"When I was in primary school I remember being bullied," she says. "Kids would say I've got a disease that is contagious and disgusting... constant stuff. Basically I didn't have any friends in primary school or high school."

After finishing school Jessica became used to going to work and then heading straight home to be alone.

"That's when the depression and anxiety kicked in."

It was finding her partner and her beloved chickens that helped her find the strength to continue on.

"I ended up finding different outlets [to deal with my depression] including gardening and my chickens, my girls, they changed my life."

Jessica says as soon as she gets home they "come running up to me."

"As soon as they hear the garage door go up they come running up as if to go, 'Where's the corn?'"

She's even started an Instagram account for her "girls" @behindthelivesofchickens.

Jessica has explored every single avenue for treatment for her condition and dermatologists have reached their limits as to what they can offer.

"I completely despise steroid creams," she says. Steroid creams for eczema are only recommended in the short term because they can thin the skin.

"If I use them long term I'm not going to have any skin layers left," Jessica explains.

Simple beauty treatments such as squeezing a pimple or waxing the hair under her arms and her legs results in skin coming off.

She's also lost most of her nails as a result of the condition.

Severe eczema, the kind that Jessica suffers from, is a severe auto immune condition. Out of options, a dermatologist suggested Jessica undergo chemotherapy which would serve to strip her body's immune system back and force it to rebuild, hopefully to a point that her skin settled.

"It hasn't worked yet," she says. "I feel really sick so I can't eat and my hair is falling out."

Jessica is worried she is out of options.

"It's terrifying, but I'm left with no option," says Jessica, whose skin is so delicate she can't even wear underwear when she has a flare up.

"The doctors say I'm a 'ticking time bomb' and my immune system is going into seventh gear, so it needs to be addressed now before everything else starts shutting down.

"I've tried everything bleach baths, UVB light treatment, steroids and so many different creams and ointments, but steroids no longer work and have totally ruined my skin and immune system.

"Oral steroids and creams used to calm my flares for a month or so, but now it's only for a week, two if I'm lucky, but they're damaging my skin, my eyes, my nails and hair.

"My eyes are getting so bad the sunlight tears them apart and makes it painful to see, and my skin and nails are so fragile they're tearing. I even have to wear gel nails so I don't rip my skin apart when I scratch."

Melody Livingstone, CEO of MooGoo, an Australian skincare range treating skin issues including eczema and psoriasis, says she's seen a dramatic rise in the number of people suffering from allergies and skin issues.

"Australia has one of the highest incidences of eczema in the world, and it is only getting worse 50 years ago, only one in 10 Australian children suffered from it," said Ms Livingstone

"Eczema can develop for a number of reasons, including climate, lifestyle, hygiene and genetics. The skin can easily become infected, causing pain, inflammation and lack of sleep," she says.

"Research shows the number of cases of eczema is on the rise worldwide, but we don't know why that is.

"There are more people with eczema than ever before - we're selling an eczema cream every two minutes.

"As there is no proven cure for eczema, psoriasis and dermatitis, education and keeping the symptoms under control is critical."

Jessica is sharing her story not only to raise awareness of chronic skin conditions such as hers, but also to raise the awareness of the extraordinary expense that comes from living with the disease.

"I spend $600 a month on skin products," she says. "It needs to be heavily subsidised. I remember my mum struggling to balance work and her income for food and rent and my skin products. It's expensive and doesn't work half the time so it's a waste."

Jessica doesn't qualify for disability payments and is working two casual jobs as often as her condition allows to pay for her ongoing treatments.

Jessica and her partner would like to start for children, but she has been told she needs to wait.

"My doctors have said we have to wait for at least two years as the treatment can cause miscarriages and defects in the baby," she says.

If you or someone you know is in need of support contact Lifeline on 13 11 14 or Beyond Blue on 1300 22 4636.

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The chronic condition that has left Jessica a relative recluse - 9Honey