Report It Right

Report It Right

In a time where the future is uncertain, Danie Tregonning and Hayley Cafarella take whatever life throws at them with a positive attitude and a sense of humour, which is crucial considering their disabilities.

The interesting aspect of their disabilities is what each girl has is considered a ‘silent disability’.  This means, that they are not permanently in wheelchairs, or have a disability that is visible all the time.

Hayley has Complex Regional Pain Syndrome (CRPS). The cause can be any sort of injury, and sometimes it just happens in people for no reason at all. 

Hayley’s disability began after she twisted her ankle – which was something where her “nervous system never registered healing from the injury”. 

She explained, “Instead, the pain gets stuck in a loop where the nervous system is constantly reporting to the brain that the area is injured. The brain feels the pain and gets very confused by the constant alarms going off, it does things like send in swelling and messing about with blood flow to try and heal like it would if there were actually damage there. The cycle just keeps repeating and repeating, with the pain being much more intense than any injury would warrant”.

“The "regional" part comes in because of how the brain interprets different areas of the body. Instead of just being confined to the injury point, the symptoms extend to the entire region (the brain is just really, really confused).”

This disability is often labelled as a ‘silent disability’, as Hayley has no constant disfiguration, or requires a wheelchair or waking sticks all of the time. 

This has been difficult when trying to explain to others what is wrong as because they cannot see it physically, so they do not believe her.

In Hayley’s case, she has often had to “…share pictures online (ie. when she has a really discoloured flare, in which case her hand will completely change colour when its position has been changed slightly and is bright red) so that people can kind of see what's wrong with me. If I need to use a mobility aid, people can see that, but they can't obviously see why I'm using it.”

 

This is often frustrating for her, “…Sadly there are those that then assume that the sufferer is crazy and the pain is a manifestation of that.” 

Hayley’s future employment is uncertain as she cannot predict when the pain will form and how long it will last for. “Even simple tasks like driving and studying can be extremely difficult for me”, she said.

The uncertainty of her disability proves unreliable as many employers are not willing to take on the responsibility of someone who may need to frequently turn down shifts.

Danie however, has “small fiber PN (peripheral meaning both sides, neuropathy meaning sick nerves)” and relies on walking sticks the majority of the time, as she has constant “numbness and  relies on walking sticks the majority of the time, as she has constant “numbness and pain in both hands and feet and the pain continues up her legs”. If Danie needs to stand for long periods of time, her disability worsens. 

The result of this caused her to leave her retail job, which she loved. She especially loved proving to the HR department she was just as capable as other staff members and even ended up running her own department.

Danie found customers and other staff members did not treat her any differently, and was even infamously nicknamed by staff and regular customers, “3 legged sales assistant”, which she looks back at fondly.

Her future employment also remains uncertain. She thoroughly enjoyed working in retail, but as she finds it difficult standing for long periods of time, she is uncertain what kind of job she will be able to perform. 

It is unfortunate that both Danie and Hayley need to prove to others that their disabilities are there and are just as serious as other disabilities, where you can physically see them. 

They both have a serious disability which affects them just as much as someone who may have a mental illness.

For the moment, Danie and Hayley spend their time blogging, tweeting and attempting to regain some sense of normalcy in their lives. Luckily, they have both kept their sense of humour which Danie feels “is completely necessary when life throws the unexpected”.