‘Well-over six-figures': Young Aussie reveals the grim cost of her health battle

News.com.au

5 days ago

Madeline Lebski went from being financially stable and working full-time, to struggling to pay her bills because she was so sick that she couldn't get out of bed.
Ms Lebski was only 27 when she got sick. She went from living in Byron Bay and embracing a healthy lifestyle to being bedridden and unable to go out with her friends, let alone hold down a job.
'I was just feeling a bit burnt out and then I took a month off, and didn't get out of bed for five years,' the now 36-year-old told news.com.au.
Ms Lebski never imagined she would become disabled. She had always been healthy with no pre-existing conditions, and her biggest health concern used to be catching the yearly flu.
When her health fell apart in 2018, she sought answers, but they weren't easy to obtain and it was also expensive.
'Every GP I went to said I had a virus and to go home and rest. I even showed up at the emergency department once, and they wouldn't admit me, and I said I needed to see a doctor for psychiatric issues,' she said.
She was diagnosed with chronic fatigue and, years later in 2022, was diagnosed with mast cell activation syndrome (MCAS), a condition where certain cells inappropriately release chemical mediators that cause a range of issues.
In Ms Lebski's case, the symptoms were brain fog, painful periods, fatigue, nausea, daily headaches, anxiety, depression and panic attacks.
Living with that chronic disease was incredibly hard; there was so much 'medical trauma' involved and her whole life became limited overnight.
'I was thinking, will I ever travel again? Will I ever work again? I lost a lot of friendships because you can't go and be social,' she said.
'It is an invisible condition so people don't really understand.'
The young Aussie explained that, once she started looking for medical specialists to try and figure out what was happening with her body, the expenses were 'crazy' and became debilitating.
'Medicare didn't cover anything I needed. It didn't cover much of the specialist appointments or alternative therapies,' she said.
'The financial stress of it exacerbates the condition. If you're in a stressful of a state you can't focus on being well.'
Ms Lebski did everything she could to self-fund the cost of her ill-health. She even sold her perfume business for $80,000.
'I ended up selling my business because I needed the money. I sold that and it paid for me to exist for the next 18 months,' she said.
When that cash ran out, she turned to Centrelink, but she wasn't eligible for payments because she lived with her boyfriend.
'I was at my wits end. I remember just breaking down on the phone to Centrelink. My partner earned like $60,000 at the time, and they were like 'It is too bad, there's nothing we can do'.' she said.
The rub was that a $60,000 salary was barely enough to support two people, let alone when one of those people needed to attend special appointments that could cost over $600 per hour.
'I made multiple attempts at trying to get on Centrelink, at one point, my parents were like, 'what if you study online?' Just so I could basically get Centrelink.'
She completed a graphic design course that cost $5000, making her eligible for Centrelink, and received some income for a period.
However, she is not sure if it was worth it. The cash flow helped at the time, but she was left with a $5000 debt at the end of it.
Things got so dire that her parents had to dig into their own funds reserved for their retirement to keep her afloat.
'They've had to use their personal savings (including) getting money out of their superannuation,' she said.
'It is hard because they're in their early 70s, they've worked incredibly hard, and this is a period of life where they should be able to enjoy that,' she said.
Ms Lebski said, 'as a family, we would have easily spent well-over six-figures' just on her health, and she even moved back to her home state of Tasmania to get more support from her family.
It has been seven years since Ms Lebski's health declined, and she's finally in a place now where she can work full-time and manage her condition.
'Thankfully all the time and money I have invested has paid off in my case. I work part-time and that is where I see myself sitting while my body is recovering,' she said.
It has been such a journey and a struggle, but there have also been positive things that have happened along the way.
The 36-year-old is thankful to have found a community online and has been sharing her story in the hopes of helping others feel less alone and isolated.
Social media has helped her find 'community and some visibility', enabling her to make friends and connections, even when she was bedridden.
Despite her complex experience with Australia's health system, she still also feels 'incredibly lucky' that we have Medicare.
'I think we are incredibly lucky for what we do have access to and I do really mean it,' she said.
'Even right now I'm on a mental health care plan and I'm so grateful for that, but I do think it is very restrictive and there's no nuance to what disability looks like,' Ms Lebski said.
She also can't help but feel this general sense of being 'behind' everyone else because she spent so many years sick.
'In another life I would have hoped that working on my business and selling it would have been something I would have bought a home with …. but that isn't the case,' she said.
'We live in rental and have a housemate to share the costs. I'm 36 and I would have loved to be able to plan for some things.'