Living with an ‘invisible’ illness

Posted July 21, 2022
Living with an ‘invisible’ illness

16-year-old Taleisa lives with an ‘invisible’ illness.

While looking well to the outside world, the teen deals with chronic pain from a range of complex health conditions.

Taleisa at Perth Children’s Hospital. Credit: Supplied

Up until last year, singing, dancing and acting were Taleisa’s life. Her mum Michelle recalls the distress seeing the sudden change in her bubbly and outgoing daughter.

“Taleisa was suffering from constant pain and was unable to get out of bed. She was fatigued and not sleeping. She was crying she was in so much pain,” her mum said.

Doctors diagnosed Taleisa with the spinal condition Sheurermann’s Disease, as well as Joint Hypermobility Syndrome, Postural Orthostatic Tacchycardia Syndrome (POTS) and anaemia.

“It was a shock, but we felt relieved to finally have some answers,” Michelle said.

Since then, Taleisa has had ongoing time in hospital and countless specialist appointments.

Taleisa at Perth Children’s Hospital. Credit: Supplied.

She missed school and struggled to go out for long periods of time. Dance classes were put on hold, replaced with physio and occupational therapy sessions.

The impact took its toll and Taleisa was diagnosed with depression and anxiety.

Taleisa said her illness felt really isolating. “My life wasn’t the best and it was hard to find people who understood what I was going through.”

That changed when the Livewire team visited Taleisa in hospital.

“Livewire had a huge impact on me. Without them, there would be nothing to keep me entertained and happy in hospital. It’s amazing to be able to talk to people who understand how I’m feeling,” Taleisa says.

Taleisa’s artwork of Kylie Minogue was exhibited as a finalist in The Lester Prize for Portraiture – Youth Section. Credit: Supplied.

Taleisa describes the Livewire community as kind, supportive and fun. She loves logging on to catch up with friends and to check out the latest guests, activities or competitions.

“There is no negativity or judgement. Whenever I feel down, there is always someone or something to cheer me up,” she says.

For Taleisa, the main benefit of Livewire is connecting with other teens who share similar experiences of hospital and serious illness.

Taleisa and mum, Michelle. Credit: Supplied

Her mum is so thankful Livewire is there for them. “The amazing Livewire team always inspire Taleisa to keep going. Livewire has played a huge part in her recovery. Thank you from the bottom of our hearts for your continuous support.”

The Starlight Children’s Foundation unique Livewire program was developed to transform the hospital experience of young people into a more positive one by providing ward-based activities, special workshops and a space for them to connect with peers, explore new interests and enhance their skills.

Telethon funding supports Livewire at Perth’s Children’s Hospital so teens like Taleisa can feel connected and thrive whilst living with serious, chronic and lifelong health conditions.

Visit the Starlight Children’s Foundation here.