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.<