Managing EDS at work: Tegan’s JobAccess journey

For Tegan, an IT Digital Enablement Analyst, work is more than just a job, it’s purpose, independence, and connection. Living with Ehlers-Danlos Syndrome (EDS) and fibromyalgia, she manages complex, lifelong health conditions while continuing to contribute her skills, creativity, and expertise to the Diocese of Toowoomba.

“I have around six hours of activity out of every 24,” she explains. “And I want to use some of that time to continue working. It’s very important to me that I’m good at what I do — that I’m contributing to society and producing something of value.”

EDS is a genetic connective tissue disorder that affects every system of the body. For Tegan, it causes chronic pain, fatigue, frequent joint dislocations, and difficulty with blood pressure and temperature regulation. It also leads to slow healing and constant bruising.

“My EDS causes crippling chronic pain, disabling fatigue, and dysautonomia. My body doesn’t maintain blood pressure, heart rate, or temperature normally,” she says. “Being sick is expensive. With specialist appointments, physiotherapy, and medication. Staying in work helps me cover those costs and stay connected.”

As her condition progressed, staying comfortable and safe became harder. Sitting or standing for more than a few minutes was painful, and even simple tasks like opening heavy doors or carrying a coffee became difficult.

That’s when her employer suggested she contact JobAccess for help.

Through the Employment Assistance Fund (EAF), Tegan received several workplace adjustments, including a specialised chair, tray walker for the workplace, and funding for an automatic swing door for the accessible bathroom.

“Before the assistance from JobAccess, I didn’t have a chair that allowed me to change seated positions,” she says. “Being able to move frequently helps me manage pain and joint stiffness. The new chair made a huge difference — the stiffness and pain when standing up went from unbearable to manageable.”

The automatic bathroom door also transformed her daily experience.

“I used to risk shoulder or hip dislocation just to open the heavy door. I was covered in bruises from leaning on sinks and from falls,” she recalls. “Now, I can use the bathroom safely. I’m so grateful for that.”

For Tegan, the JobAccess process was “an absolute breeze” compared to other systems.

“It was very simple compared to accessing supports through other programs. The process respected and acknowledged my need to live and work,” she says. “This program gives people opportunities to make the most of the skills they have.”

Her employer has also been proactive in supporting her, installing the automatic door and encouraging accessibility for others in the workplace.

“It’s a win for them too,” she says. “The adjustment benefits me, but it also helps others who might need accessible facilities in the future.”

EDS awareness is deeply personal for Tegan. She wasn’t diagnosed until she had already lost the ability to walk.

“Had I known earlier, I might have been able to prevent some of the damage,” she says.

“For employers, I want them to understand that people with EDS are often pretending to be much more well than they are. It’s not just ‘being bendy’. It’s a complex condition that affects every part of life.”

She says acknowledgement and understanding make all the difference:

“Recognition of the condition and acceptance of its broad impact means people can be properly supported.”

Tegan wants her story to challenge assumptions about disability and work.

“I’m a smart, capable, and passionate professional,” she says. “I’m not easily replaceable, and my colleagues value what I do. I create great value for my organisation. I’m no charity case, it just makes sense!”

For others thinking about asking for workplace adjustments or reaching out to JobAccess, her advice is clear:

“Oh, don’t hesitate! The process is very straightforward compared to the challenges you already face every day.”

She also hopes to see more services available in regional areas for people who are unable to access the National Disability Insurance Scheme (NDIS).

“If the NDIS is only for people with the most severe disabilities, there have to be options for everyone else,” she says. “Support like JobAccess helps people like me stay in work, and that’s life-changing.”

Get started with JobAccess

JobAccess is the Australian Government’s hub for disability employment support. Whether you’re an employer, service provider, or jobseeker, JobAccess can help you create a more inclusive and accessible workplace.

Visit www.jobaccess.gov.au or call 1800 464 800 to speak with an adviser.