Hidden disabilities, often overlooked by the public, can profoundly impact daily life, even when their effects are not immediately visible. Conditions like chronic pain, neurological disorders, and autoimmune diseases can challenge individuals without being recognized at first glance, as highlighted by Hidden Disabilities UK.
For Emma and her daughter Izzy, this reality is all too familiar. Izzy, a curious and energetic child with a life-threatening condition, appears no different from any other child. She enjoys participating in school shows, reading books, writing stories, and playing with her friends. However, because her condition is not outwardly visible, Emma and her husband Neil often face scepticism when using disabled parking spaces, with strangers unaware of Izzy’s hidden struggles.
“People assume everything is fine because Izzy doesn’t ‘look sick,’ but they don’t see the sleepless nights, medical equipment, or constant worry,” says Emma. “Yes, this is finIt’s wonderful in many ways that no one knows Izzy was so sick when she was little, and even now, while she is stable, they have no idea about the extra care. But that also makes it exhausting as people wonder why you feel so anxious and worried much of the time!”
This scenario ties into broader issues discussed by disability advocacy groups, such as The Disability Rights Commission (UK), which address the misuse of blue badges and, alongside this, the challenges by members of the public to disabled people who don’t look disabled.* The frequent misunderstandings faced by families like Izzy’s highlight the ongoing struggle for recognition of hidden disabilities.
In addition, families facing life-threatening conditions, like Izzy’s, often endure emotional strain and isolation, highlighting the urgent need for greater support and awareness. Charities such as Jessie May, the South West’s children’s hospice at home, play a vital role by providing expert medical care, emotional support, and respite, allowing families to focus on spending quality time together despite the challenges.
“Jessie May has made such a difference for us,” Emma says. “Their support allows us to feel more like a family and less like we’re just managing a condition.”
“Life-limiting conditions are not always visible, but the challenges are very real,” says Jessie May nurse Steve. “I have seen Izzy grow up and witnessed both her resilience and the immense effort her family puts into her care. Behind her smiles and laughter, there’s a level of vigilance and dedication that many wouldn’t realise.”
This year, Jessie May is urging the public to acknowledge the hidden battles families like Emma’s face and to contribute to making their journey a little easier. At a time for giving, small acts of kindness can make a big difference, bringing comfort and connection to families facing hidden disabilities, whether through donations, volunteering, or raising awareness.