Michelle’s Story
In 2020, when Michelle celebrated her 56th birthday she was finally diagnosed with Hypogammaglobulinemia after years of unknown causes to her being unwell. This is her story...
Although Michelle is unable to work, she finds solace in painting reborn dolls. She aims to paint a little each day, as it keeps her brain focused, and it is very therapeutic for stress levels. To manage her condition, Michelle listens to her body, and rests when necessary, even if that means she takes a nap mid-morning. Most times, her Toy Poodle Ziggy will be snuggled up beside her – which she finds very comforting.
In her late twenties, Michelle began experiencing persistent discomfort, prompting her to delve into the root causes of fatigue, mental fogginess, and an inability to perform at her optimum level.

Originally from Queensland, Michelle made the decision to relocate to Tasmania at the age of 21, accompanied by her two young children. Following the move, she attributed her ongoing physical pain to difficulty acclimating to the new climate.

More than 10 years later, she met her now husband Tony and the decided to move their lives to Victoria. With the assumption that the pain and discomfort would ease, this was not the case, Michelle was still struggling to get everyday tasks completed. Furthermore, she had now visited a range of doctors who told her they couldn’t figure out what was wrong, and her blood came back ‘normal’. This was not only heart breaking but impacted her emotional wellbeing as she knew that there was something ‘wrong’. The constant disbelief and unhelpful doctors led her and Tony to pack up their lives and move further North to QLD.

The move to QLD proved to be hopeful as for a little while she was feeling a bit better, however they decided due to family, they would relocate back to Tasmania in 2006.

In 2020, when Michelle celebrated her 56th birthday she was finally happy with her GP, and her ability to see that there was something wrong. Her GP continued to investigate and sent Michelle to an immunologist. Many tests were done at this time. Five immunisations were administered, and then more bloods done weeks later to see if Michelle was able to build up any resistance, however it was found she couldn’t, and she was then diagnosed with Hypogammaglobulinemia.

Although she was grateful to have a diagnosis, the journey is a challenging one from here, as the treatments available for her condition require certain levels of criteria to be met, and she just quite doesn’t meet them, leaving her with no treatment available, and having to live in constant pain, lack of energy and brain fog.

At a certain juncture, she was referred to a haematologist with the expectation of undergoing haemoglobin treatment. However, she ended up receiving an iron infusion instead and was scheduled for another, even though her iron levels were satisfactory at that point. Subsequently, she sought the assistance of another haematologist who essentially conveyed that he was unable to provide the help she needed.

Michelle did enquire about travelling to mainland Australia for treatment but was advised that as there are specialists in Tasmania, it wouldn’t be covered by government funding. So, instead, she continues to visit local doctors, and always tries to advocate for what she needs.

With her condition, she is unable to work, but she can however drive herself to hospital appointments, and walk to her doctor, which is only 2 minutes away.

These days, although Michelle is unable to work, she finds solace in painting reborn dolls. She aims to paint a little each day, as it keeps her brain focused, and it is very therapeutic for stress levels. To manage her condition, Michelle listens to her body, and rests when necessary, even if that means she takes a nap mid-morning. Most times, her Toy Poodle Ziggy will be snuggled up beside her – which she finds very comforting.

Michelle also enjoys cooking. Her and Tony recently moved from a one bedroom place (with meal included) to a house with a kitchen. They are both enjoying the freedom of being able to prepare meals and share delicious nutritious meals together.

Published: December 2023