It is important to remember that when people think of disability, they often only consider the obvious physical disabilities that can be seen. However, invisible disabilities are much more widespread, ranging from chronic migraines, depression, anxiety, to autoimmune diseases. When discussing disability, we must recognize that not all disabilities can be seen. While it is easy to identify someone in a wheelchair or using a guide dog, invisible disabilities often go unnoticed. In fact, 90% of the 4.4 million people with disabilities in Australia are living with an invisible disability that is not always visible to the public eye. It is crucial to keep this in mind and to be understanding and supportive of those living with invisible illnesses.

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Living with Fibromyalgia and Necrotising Fasciitis: A Personal Journey

Michelle's experience with invisible illness began in 2009 when she was diagnosed with Fibromyalgia, a chronic pain and fatigue condition with over 250 symptoms. However, the road to diagnosis was arduous, filled with dismissals and stereotypes. Despite persistent pain and fatigue since a fall from her horse at age 10, Michelle remained determined to live a full life. However, a workplace accident in 2019 exacerbated her condition, leading to debilitating pain and numbness in her hands. Seeking answers, Michelle faced judgment and disbelief from medical professionals, labeled as a hypochondriac and drug seeker. It wasn't until she found a compassionate doctor who listened that she received a proper diagnosis. Despite the relief of finally having a name for her condition, Michelle was devastated to learn that there was no cure for Fibromyalgia, and she would have to adjust her life to manage the symptoms.

It was like being handed a one-way ticket to a journey I never signed up for. A journey of fatigue, lost friendships, depression, suicide and ultimately, hope.

 

Over three years, an invisible illness slowly took away her ability to do the things she once enjoyed. Even the smallest activities became taxing and, as such, she had been forced to say no to the things she used to love – horse riding, motorbike riding, swimming, and playing indoor cricket where she represented WA just to name a few

 

The impact of this reflected on her social life as she found it increasingly difficult to participate in activities with friends, which resulted in losing the majority of them. Michelle often declined invitations to social events, knowing that it would leave her too fatigued the following day. But this wasn’t the only reason; sometimes it seemed as if she could no longer relate to the friends she had and found it difficult to express herself in front of them, causing communication to be strained.  The impact became wide-reaching, taking away precious moments that could have been spent with friends and family. While she may not have the same capacity for social engagements , she's learning to accept and adapt to this to take back some control over her life.

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Michelle's marriage began to crumble as her husband struggled to understand her fluctuating condition. He couldn't comprehend how she could be fine one day and then unable to get out of bed the next. His belief that she was lazy and unreliable led to arguments and difficulties, ultimately leading to their separation. Unable to manage her own life, Michelle was forced to give up her job as she became too unreliable, adding to her sense of failure. Feeling depressed and ashamed, Michelle found herself sinking into despair, with suicidal thoughts consuming her. However, it was the love and innocence of her 18-month-old granddaughter that pulled her back from the brink. The child's unwavering belief in Michelle's worth and her simple expression of love reminded Michelle that she was still capable of achieving great things and that she was still loved. This gesture of unconditional love reignited Michelle's sense of self-worth and purpose, propelling her forward with renewed determination. 

That simple gesture of unconditional love brought me back from the brink of despair and made me realise that I was still capable of doing great things. I was still somebody, I was still loved!

The fight for her life

In 2020 during the height of COVID lockdown, Michelle faced another life-threatening challenge when she contracted Necrotising Fasciitis, often called the "flesh-eating disease, a severe bacterial infection that attacks the body's soft tissue. Presenting to her local emergency department with what she thought was tonsilitis turned into a fight for her life. You probably won't hear too many people say "Thank God for COVID" but you will certainly hear it from Michelle.

 

Because of COVID, instead of doing the gland touch check for tonsillitis, they sent Michelle in for an ultrasound. They discovered that her tonsils were up but there was also something else visible. They then sent her in for a CT Scan where they found an abscess. Michelle was then advised that she was being sent lights and sirens to our major hospital as they were better equipped to deal with something like this.

 

Six hours after presenting to the emergency department, and in the theatre waiting area, the abscess burst, leading to emergency surgery. The procedure became a 7-hour ordeal, and Michelle was subsequently placed in an induced coma for 2 days. Shockingly, she died 7 times during this life-saving surgery. Upon waking up, Michelle initially felt well enough to consider going home, but her doctors informed her of the gravity of her condition. She was advised that she had been extremely ill and required further surgery.

 

Undeterred, she resumed her work with Invisible Illnesses from her bed, calling members to check on their health, much to the dismay of her care team.

 

Necrotising Fasciitis”, is a rare flesh-eating disorder that usually attacks the limbs or muscles. The only known cure is amputation or to removal of the infected muscle. Unfortunately, Michelle, is in her head, which has become a challenge. Even though all the dead tissue was removed and her system was flooded with antibiotics it did not kill the bacteria. Four years on, she still struggles with this condition. Despite everything thrown at the bacteria, it’s still present and has now moved to her eyes, affecting her vision and into her nasal cavity.

 

This condition is gradually forcing her to lose her independence and slowly taking her life.

 

“I refuse to let it beat me. I have to much to do. I know where I want to be with Invisible Illnesses, and that’s where I’m heading.”

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Continued Growth and Impact
Seven years on, Invisible Illnesses Inc. continues to grow, expanding its reach across Australia and into New Zealand. The organization offers a range of programs, including workshops, op-shops, and support for those with an invisible illnesses and victims of domestic violence and those facing homelessness.

 

Through her work with Invisible Illnesses Inc., Michelle has found her voice, strength, and purpose. She is committed to breaking the stigma surrounding invisible illnesses, promoting understanding, and providing support to those in need.

 

Promoting Understanding and Empathy

Michelle believes that empathy and understanding are key to creating a more inclusive society for those with invisible illnesses. By sharing her story and advocating for awareness, she hopes to inspire others to support and empower those living with invisible illnesses. Through education, empathy, and advocacy, Michelle aims to break down barriers and create a world where invisible illnesses are understood, accepted, and supported.

 

Michelle's story is one of resilience, empowerment, and unwavering determination. Her journey serves as a testament to the strength of the human spirit, inspiring others to embrace their challenges and turn them into sources of empowerment.