What these roommates want you to know about women living with Parkinson's disease

Li Jiang and Elaine Jongsma share something that a lot of people living with a chronic illness don't get to experience: Someone who understands.

Jiang, 36, and Jongsma, 66, may be three decades apart in age, but the Hamilton residents are similar in other ways. As well as loving cycling, crafts and cooking, both were diagnosed with Parkinson's disease and say they have a shared understanding of some of the struggles many women with the nervous system disorder face.

"Having someone living with you who has the same disease as you, that innate understanding that we have of each other, is really, really special," Jongsma told CBC Hamilton.

The two have been living in Jongsma's cozy and colourful home since September. They have open conversations that seem easy — something you might hear from two lifelong friends. 

Jiang and Jongsma are also part of Woman Enough, a Parkinson Canada campaign launched in March that aims to highlight the "overlooked" experiences of women with the disease.

Jiang and Jongsma say they've both felt dismissed by medical professionals. According to Jiang, they sometimes have to be accompanied by a man to be taken seriously by a doctor.

"I had to cry at the doctor's office in order to get the kind of treatment I wanted."

Jongsma had a similar experience when she felt she had to bring her sister, who is a doctor, to her medical appointments.

"Totally different treatment when she was with me," she said.

The Parkinson Canada campaign, running this month in conjunction with International Women's Day, highlights research gaps for women, gender-specific support groups and stories from women navigating Parkinson’s, including Jiang and Jongsma.

Parkinson’s disease affects around 110,000 people in Canada and is the fastest-growing neurodegenerative disease in the world, according to Dr. Sarah Lidstone.

But it's the experiences of women with Parkinson's that remain less understood.

"We can say for sure the women aren't being diagnosed as often," Lidstone said.

Lidstone, a movement disorders neurologist and physician innovator with Parkinson Canada, said Parkinson's shows up differently in women, who also may be diagnosed later than men.