Throughout her life, Michelle dealt with frequent illnesses, particularly respiratory infections that seemed to linger far longer than they did for others. Even as a child, she found herself battling various health issues, and it wasn’t until her adult years that she began to uncover the underlying cause. After persistent symptoms and the recommendation of her general practitioner, she underwent testing and received her formal diagnosis. Michelle has faced cancer twice, the first time when she was only 24, which shaped her perspective on life. The diagnosis of CVID was very much a relief because it wasn’t cancer and gave her the answer to so many questions. She was also grateful that it could be treated with IVIg. While the infusions will happen for the rest of her life, she and her husband, John, work everything else around them, including travel. Travel can be difficult because she is limited to where she can go, so they target “safe” places and stay close to home. Their goal is to capture as much of their country as they can, and they recently made it as far as Macquarie Island in the Subantarctic, which was a huge achievement for her!
CVID left Michelle with diminished immune function, making her vulnerable to infections. This diagnosis marked a turning point, shifting her perspective on life and health. However, it wasn’t just the diagnosis that influenced her; it was also the realisation that she had the support of her family, particularly her husband John, who has an amazing positive attitude, close friends, and a dedicated healthcare team. Michelle credits her husband with being a strong pillar of support, guiding her through the challenges that accompanied her condition. They cope by always having something to look forward to and by trying to do what they can, while they can, and as quickly as they can. They both have a very much “seize the day” attitude, knowing that life is not a dress rehearsal and things can change so quickly.
Retirement has granted Michelle the time to explore her passions, particularly her love for photography. This hobby serves as a therapeutic escape, allowing her to immerse herself in nature, whether it means hiking in the National Park, taking their mad puppy for a walk, or being on a boat or in the water, enjoying the calming effect of the ocean and capturing the beauty around her. Photography provides peace and helps take her mind off her health challenges, offering a reprieve from daily concerns.
Adapting to her diagnosis has not only meant managing her health but also finding ways to enhance her quality of life. She developed a routine that includes gentle exercise and yoga, aiming to stay active while listening to her body’s needs. While she has faced obstacles, including multiple health issues arising from her immunodeficiency, Michelle’s focus remains on making the most of every day.
She finds joy in her family, making it a priority to foster connections with her loved ones. Michelle believes that surrounding herself with positive people is essential for her well-being, especially when navigating life with health challenges.
Despite the struggles associated with CVID, Michelle holds a deep desire to raise awareness about rare diseases. She understands the importance of educating others to ensure that individuals like her are recognised and supported. Advocacy and education about rare diseases is vital because they often look “normal” and do “normal” things, but under the surface, they are people who are constantly fighting and managing a hidden disease that consistently drains energy. Michelle actively participates in initiatives aimed at increasing understanding of immune deficiencies, hoping to shed light on the realities of living with such conditions.
In reflecting on her path, Michelle acknowledges the journey of acceptance she has undertaken. She didn’t feel overwhelmed by her diagnosis initially, as she wasn’t well at the time and was so relieved to finally have an answer and know that it could be managed through treatment. She was pretty happy when she found the IDFA because she then knew that she wasn’t alone. By seeking out information and support, she empowered herself to face the challenges ahead. By sharing her story, she hopes to encourage others facing similar obstacles, promoting a sense of community and solidarity.
With each passing day, Michelle embraces life with a renewed spirit, demonstrating that resilience can grow from adversity. Her journey offers not only insight into living with a rare disease but also a testament to the power of advocacy, family, close friends, and the joy found in everyday moments. Through her lens, both in photography and life, she continues to capture beauty, reminding us all to appreciate the small joys that make life worthwhile.