Every day, Evelyn Froend wakes up in chronic pain.
Even after 12 hours of sleep she starts the day tired, with only enough energy to tackle a few daily tasks.
"I'm always exhausted," she said.
"I have to choose between having a shower or making some food … I can't necessarily do both."
Evelyn is living with autism as well as a physical disability: Ehlers-Danlos Syndrome (EDS), which causes severe pain and makes her joints overly mobile and prone to dislocation.
This means she users crutches to help her walk through a shopping centre and wears braces on most of her joints, including fingers, wrists and neck to stop the joints dislocating while she types on a laptop or works on her art.
Evelyn and her friend Sarah Davies, who also has EDS, both love art and have been creating for most of their lives.
They draw digital art together, mostly explaining the challenges of living with EDS, and post the work on their Facebook page, Connective Issues.
Evelyn likes to paint while Sarah prefers digital and hands-on work like sculpting.
They find it therapeutic and helpful for managing their pain.
"Art is really important to me," Evelyn said.
"When I stopped being able to work, I needed something that I could do to feel productive and fill my time. So, I started creating again."
For Sarah, art is about communicating what can't be expressed by words.
When the pair met on a Facebook group for people with EDS, they didn't know how important their friendship would be.
But without much support from doctors, supporting each other every day is vital.
Problems communicating the pain
EDS is a spectrum of genetic disorders that manifest with a range of physical symptoms like hypermobile joints, dislocations, chronic fatigue and pain.
Evelyn and Sarah have a variation called hypermobile EDS, a very painful form that impacts every bodily-system and can be fatal if left unmanaged.
Unfortunately, EDS is not well understood by the Australian medical system.
For people who also have autism it’s harder to get EDS symptoms managed because they communicate about them differently.
Evelyn says she has a different awareness of pain to other people.
"I kind of learned about my body differently growing up," she said.
"I find it really difficult to explain how I experience things [like] different sensations and pain."
Sarah feels doctors dismiss their symptoms because they have learnt to live with them, and they don't express emotions like non-autistic people do.
"Not showing emotion is often taken to indicate that our symptoms are not significant," she said.
"This is something that is made more complicated by autism, because we don't show our emotions or pain in the same way."
Sarah said when their problems were being ignored, they found it difficult to communicate.
"I can address pretty well on behalf of other people," she said.
"But when I'm in that situation, I often lose my ability to speak.
"And that's partly trauma and partly autism."
Evelyn also finds it difficult communicating with doctors.
"I feel like we shouldn't have to be trained in neurotypical social skills, doctors should be better at communicating with people with autism," she said.
Searching for a link
While Sarah and Evelyn's situations are rare, they are not unique.
More than 200,000 Australians have autism and about six per cent of those also have EDS.
Telethon Kids Institute autism researcher Dr Jess Reynolds said the link between autism and EDS is still to be discovered.
"It's still one of those ones that we're needing to do quite a lot of research on," Dr Reynolds said.
"But we do know that there's a much higher overlap for autism and hypermobility conditions than what we would expect in the general population."
Dr Reynolds said sensory issues were common for people with autism, and it made explaining symptoms like pain challenging.
She believed uncovering the link would help doctors understand both conditions better which would improve diagnosis rates and patient care.
Helping others
Both Evelyn and Sarah are passionate about advocacy for people living with hypermobile EDS and autism.
They spend hours researching and designing information sheets about EDS, which are posted on the Connective Issues page.
The goal is a simple one: make the information about EDS accessible to everyone so people starting their journey with the disability will be prepared.
They also hope medical professionals will read the sheets and be better informed about the condition.
"We get people in the EDS WA group who will be like 'I'm newly diagnosed, can someone point me in the direction of who will help … is there a clinic where we can go?'" Evelyn said.
"None of that exists. You have to organise all the supports and everything yourself."
Source: ABC