Madeline before her condition changed her life
By Spencer van Vloten
September 7th, 2021
Stricken with myalgic encephalomyelitis, Madeline has been treated as hysterical by a health care system which stigmatizes chronic illnesses and the treatments for them - leaving her to consider medical assistance in dying.
Moved by Madeline's story, Ash Kelly hosts the I Am Madeline podcast, which discusses the issues that Madeline and thousands of other British Columbians with chronic illness face.
We talked with Ash about how the podcast started and how governments are failing to help people like Madeline.
Why did you start the podcast?
Ash: I got to know Madeline through a friend and I just couldn't look away from her story. She has myalgic encephalomyelitis and about 25 co-morbidities which impair digestion, and cause chronic pain, fatigue, and immune deficiencies.
Here's this vibrant woman who was an actress, singer, and community leader in the prime of her life, who's now so desperate that she's considering medical assistance in dying (MAID) because the government hasn't been there for her.
We connected and she left me some tapes so I could share her story after she died, to honour her and make a difference to others going through the same situation.
Ash Kelly hosts the I Am Madeline podcast (photo: Ash Kelly)
Madeline had planned on using MAID, but a GoFundMe was started and money for treatment began trickling in. She was then able to afford therapy that improved her condition, but the money runs out fast and she’s always just scraping by.
I wrote 2 stories about Madeline for News 1130, but I wanted to do more for her and to bring greater attention to the issue, and that's how the podcast started.
What treatment does Madeline need?
Ash: Because of the dearth of research, that exists due to stigma in the medical community about chronic illness, there are no clinically proven, clinically tested guidelines for treatment.
The treatment is further stigmatized because of the lack of testing, and because of this it's seen as naturopathic and isn’t covered.
The treatment prescribed to her is just to manage energy levels, and to help her work within those - and Madeline's energy level only lets her be active for minutes. Her treatments include supplements and vitamin IV injections, but those are costly so it's difficult to continue them.
What's preventing chronically ill British Columbians from getting the treatment they need.
Ash: It goes back to stigma.
For a long time, these conditions have been seen as psychosocial disorders, as something that’s all in people's heads. People like Madeline are regarded by the medical system as being hysterical, not actually sick.
People like Madeline are regarded by the medical system as being hysterical, not actually sick
Diseases like this also primarily impact women, and have been chalked up to hysteria, seen as middle-class women’s problems.
The medical system’s sexist; when women are in pain, it’s seen as depression, they’re told they need to settle down and just relax, and years of misogynist research and medical practice has perpetuated this.
What can be done to improve life for people with chronic illness?
Ash: The most urgent thing right now's to write and question election candidates about how they value people with disabilities, and what they plan to do to lift them out of poverty and help them enjoy a higher quality of life.
Poverty is criminalized and legislated in Canada, and we haven’t seen political will to lift Canadians out of it.
The provincial government hasn’t used its power to help people with disabilities get out of poverty. The feds handed over $22 billion to the provinces, but little of it has gone toward helping disabled people.
Poverty is criminalized and legislated in Canada, and we haven’t seen political will to lift Canadians out of it
The federal government also introduced the Canada Disability Benefit, but there aren't any details out about it. The legislation was more of a discussion paper and the timing was very political; 'lets get this out before we break and hold an election'.
Even the financial assistance disabled people got during the pandemic was insufficient. It was a single $600 payment, only for those who get the disability tax credit, whereas people who lost work got $2000 a month.
It sends the message that people with disabilities aren't valued.
What comes next in Madeline's case?
Ash: COVID's magnified isolation for Madeline and I think many others with chronic illness. She’s never been in such a painful place and her condition’s deteriorating.
The price of existing went up; it's near impossible to get access to things she needs and she's foregone treatments just to get toilet paper. There's no meal support, no cleaning support, and she's really struggling with brain fog and to contribute to the podcast.
As long as she can get treatment she will continue to stay alive, but it’s becoming more difficult to afford.
Spencer van Vloten is the editor of BC Disability. To get in touch, send an email to firstname.lastname@example.org!