Australia’s First Chronic Health Doula – Her Story

By Vicki White

So Vicki, you've had your own health challenges,
tell us about that. . .

I’ve been a carer for most of my life, as a mum of two boys with special needs (autism and epilepsy), working with children with special needs and as a nurse. But in 2011, a series of ‘one in a million’ medical events over a 24-hour period resulted in me fighting for my life and changing it forever.

A regular bloody donor, in 2011 as I was driving home after donating and my heart went into coronary artery spasm. I was taken on an RFDS trip to Perth where they performed an angiogram, but a ruptured artery that was only found after the procedure left me fighting for my life and, ironically, in need of a number of blood transfusions. Within 24 hours, I began presenting with strange symptoms, including reduced sensation down my left side, flu-like symptoms, aches, pains, headaches, weakness, nausea, vomiting… the list went on.

I was tested for a stroke and brain tumour, had CT scans, an MRI, blood tests, and so on, without conclusive results. I was told it was most likely that my nervous system was in shock as my body been through a crisis, and then I was sent home to a completely different life.

Over the following years, my condition continued to deteriorate. I was also caring for my eldest, who had been chronically ill since he got a tick bite with ‘Bullseye’ rash at 8 years old. At the time, we had no idea of the relevance of that rash. By 2014, he was bed- and house-bound. He couldn’t walk most of the time, suffered from severe pain, vomiting and fatigue, and his symptoms were, and continue to be, utterly debilitating.

Due to the loss of sensation and function in my left side, by that time I was unable to care for myself let alone my eldest. My weight plummeted 20kgs, I had gastro issues and lived in constant excruciating pain. I also suffered from iritis, hearing impairment and loss of cognitive function, to the point where I couldn’t fill in a form, remember relatives’ names or string a sentence together, to name just a few!

Then in March of 2014, a chance comment by a doctor in Perth led to my eldest finally being diagnosed with Lyme disease. And as I was researching this illness, I began to put two-and-two, recognising many of my own symptoms as indicative of Lyme.

After being tested overseas, and coupled with our clinical presentations, we were both diagnosed with Lyme disease. I believe I contracted mine from the blood transfusions I was given to save my life after the botched angiogram. The irony is that in Australia blood isn’t screened for Lyme Disease as the authorities don't believe it exists here.

In November of 2014, with treatment options also being limited in Australia, my eldest and I travelled to Germany for treatment at Klinik St Georg. The treatment worked for me, but sadly not for my eldest, who is terminal although stable at this stage. I would say I am around 70% better, able to function and I have, to an extent, been given my life back. I now realise I will never be as active and physically capable as I once was, and I’ve learned to live with the cognitive function issues, monthly migraines, pain and fatigue that remain. Unfortunately, to add insult to injury, while we were undergoing treatment abroad, my youngest son was also bitten by a tick and contracted Lyme.

How did you get into being a Doula and how has it helped patients?

After our treatment, we focused on getting well in the hope and belief that we would both make a full recovery. Over time, however, it became clear that my eldest would not recover, and mine would be only partial. I started to spend more and more time in Perth to be with him and have access to the necessary care, as we are from a small country town where medical resources are limited.  

As my health stabilized, I wanted to go back to work, but knew I fell into the category of an ‘unreliable’ employee. My fatigue and migraines can be debilitating at times, and other symptoms mean at certain times of the month I cannot be counted on. But the desire to help others remained.

Throughout my journey I’ve shared my experiences and knowledge, not only with regard to Lyme but chronic health conditions as a whole. A friend said I should consider making a business out of my knowledge and ability to support others. And the idea for LaurenKate was born!

It has taken work, determination and passion to get to where I am today, but it is all worth it knowing that I am making a difference in people’s lives. My mission is to help others save time, energy and money, while giving them the opportunity to be guided and supported, but most importantly ‘heard’. I also work with the partners and families of those living with chronic conditions, as often they have an even greater weight to bear in caring for their loved ones.

Working for myself means that I’m able to work my business around my condition, instead of the other way around. I get monthly migraines leading up to a new moon, so I schedule time off for in anticipation so as not to impact my clients and give my body time to heal. My appointments also start at 10am, allowing me time before work to ensure that my son is comfortable and his morning requirements are fulfilled. I can also work from wherever as most appointments are via phone or videocall, meaning that my clients don’t to leave home or even their beds to work with me.

What's your best tip / word of advice for the chronically ill?

You’re an individual! Your condition, situation and life are as unique as you. Don’t play the “I’m worse that you” comparison game. You are on your own journey, no one else’s. Some are similar, but none are the same. So be kind to yourself, make choices and decisions that work for you and your immediate family, listen to your body and respond to what it tells you.

People will judge, offer advice, criticise, empathise, mimic, sympathise, isolate and at times just be down right rude to you. See that as a reflection on them, not you. People in general are unable to fully understand another’s situation if they have not experienced it themselves, and many are simply just selfish. This can leave you hurt and angry, but learning how to respond to such situations, to educate others and to allow yourself not to feel guilty is one of the most powerful lessons.

What can people expect when they book in with a Doula?

They get a free initial 20-minute appointment to discuss individual needs and get to meet me before taking the decision to work with me. Being heard, truly heard by someone who actually ‘gets it’ with barely any explanation, with a professional medical background for added support and who lives with chronic conditions themselves is so important in the healing process. LaurenKate is therefore a ‘no judgement’ zone, a place where people are free to speak their minds with someone who isn’t emotionally invested in the situation.

My starting point is not only assessing the biggest issues they face but also identifying their highest priorities so as to make an individual plan for moving forwards. The key is to find out what is important to that particular person, what they actually need, not what someone else thinks they need.

What is the biggest issue patients face / need your help with?

The scope is as large and as individual as my clients! The need be heard, assistance with finding funding or practical support, navigating the maze that is the healthcare system or simply where to start when newly diagnosed. It could be relationships and intimacy that needs working on, or a parent assisting a child living with a chronic condition to transition into adulthood. Or even just having someone come in and do a home review to identify time, money and energy saving techniques in the home. I think the best way to describe LaurenKate is as a ‘one stop shop’, exactly the shop I needed when I was so sick in order to get the support, answers and guidance I so desperately needed.

How can people find out more about what you do?

Visit www.laurenkatecilc.com where they can also find my e-books Viks Tips and Getting Sh*t Done, which are packed full of hints and tips to support those living with chronic conditions inspired by my own journey. Also follow LaurenKate Chronic Health Doula on Instagram and Facebook, where I have a number of support groups and a Medical Equipment Buy Swap & Sell WA Group.