‘I shouldn’t have to beg for my life’: B.C. woman can't afford treatment for painful disorder | iNFOnews | Thompson-Okanagan's News Source

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‘I shouldn’t have to beg for my life’: B.C. woman can't afford treatment for painful disorder

Madeline was an actor and playwright until chronic illness changed her life. Her old headshot, she says, "is the face of promise lost."
Image Credit: SUBMITTED
July 12, 2021 - 6:00 AM

On a warm Saturday afternoon in May, Madeline was watching her friend’s young daughter open her birthday gifts. But as the girl sat under a tree in the park, tearing wrapping paper off a book about drawing horses, Madeline’s heart was breaking. “I don’t know if I will get to see her next birthday.”

Madeline has been preparing for medical assistance in dying, or MAID, for over a year, and says she could choose to die as soon as late July if she does not come up with the money to cover treatments for her complex mitochondrial and post-viral conditions.

Myalgic encephalomyelitis/chronic fatigue syndrome is a multisystem disease that affects patients in myriad ways, leaving many with profound fatigue, cognitive and mobility challenges, trouble sleeping and in extreme pain. It can impact nearly all systems in the body, including respiratory, muscular, nervous and immune systems.

Madeline says naturopathic intravenous injections of vitamins that make her life “less horrifying” could allow her to continue living. But B.C.’s Medical Services Plan doesn’t cover most naturopathic services, and she can’t afford them on her own. The treatments and home supports like cleaning and cooking help she needs to live “not in agony” would cost about $100,000 per year, she estimates.

With relatively low funding levels for ME/CFS research, few specialized clinics and little coverage for emerging treatments that can help some patients, Madeline says B.C.’s medical system doesn’t properly recognize her illness, which affects about 77,000 British Columbians. 

“Nothing in life is fully enjoyable, because the death clock beats on in my life, and it just never had to be this way,” Madeline told The Tyee.

She can’t afford the necessary treatments on the $1,358 she receives per month as disability assistance, nor the support she needs with housework and personal care. But her diminished  quality of life qualifies her for MAID.

“They would rather see me die than  recognize my illness and pay for the treatments that keep me alive,”  said Madeline. “My death is no more inevitable than a diabetic’s who  can’t get insulin.”

Dr. Lucinda Bateman is medical director of  the non-profit Bateman Horne Center in Salt Lake City, Utah, where she  treats ME/CFS patients and conducts research. She said diagnosis and  support for ME/CFS patients are often delayed because the symptoms are  varied and can seem unrelated.

“The diagnosis of ME/CFS really doesn’t  come to mind in the beginning, because most people are just trying to  cope or, you know, get over a flu syndrome,” said Bateman. “Sometimes a  lot of time has gone by before anybody, or any medical provider starts  to say, ‘Could it be ME/CFS?’”

Vancouver is home to one of Canada’s three ME/CFS clinics, and a fourth is coming soon to Montreal. 

But Alain Moreau, head of the Viscogliosi  Molecular Genetics Laboratory of Musculoskeletal Diseases at the  University of Montreal-affiliated CHU Sainte-Justine hospital, notes  that there are about six specialists in the country and 600,000 people living with ME/CFS. 

“It’s like having 100,000 patients, and you’re never going to be able to get to all of them,” he said.

Patients will often diagnose themselves  long before they receive an official diagnosis from a physician, who  often “don’t know or are not familiar with ME/CFS or how to manage it,”  Moreau said. “And like many chronic illnesses, it’s harder to manage  something that you can’t readily cure.”

After two extended and severe bouts of  mononucleosis, first as a child and then as a young woman, Madeline  eventually developed ME/CFS, which is a facet of her chronic post-viral  syndrome.

Little is known about how or why certain  viral infections can trigger ME/CFS, but even common viruses like  Epstein-Barr can lead to the condition in 10 per cent of patients.  Research is being conducted into how changing stressors, immune functions and potential genetic links may cause ME/CFS.

The condition’s effects ended Madeline’s  ability to work more than two decades ago, and she lives with chronic  pain and fatigue. (The Tyee has used a pseudonym to protect her  privacy.)

Madeline is a trained actor  and playwright who works as a volunteer to build bridges between  able-bodied and disabled communities. She is a self-described “nerd  girl” who loves long Skype calls with friends from her online  communities around the world as much as Vancouver’s cherry blossom  season.

But when she couldn’t find answers,  recognition for her illness or funding to pay for treatments, her  artistic ambitions were pushed aside.

Bateman said that’s a common experience for ME/CFS patients.

“Their world gets smaller and smaller as  they gradually learn what they need to do to manage symptoms,” she said,  which could be anything from avoiding large crowds and bright lights to  sleeping most of the day.

Madeline now faces more than two dozen  health obstacles, from allergies to edema, a permanent swelling in her  body, while living in Vancouver on sub-poverty disability assistance.  Her health conditions have worsened and grown in number from around a  dozen in her teen years, she said, and now interact with one another in  ways that can be catastrophic.

Bateman said the multisystem nature of  ME/CFS means every patient experiences complications differently, and  even routine medical care for a broken arm or infection needs to take  into account a patient’s diagnosis. The lights, sounds and crowds of a  hospital can make things far worse.

A connection to long-COVID

The silence and stigma around disability  and chronic illness is exactly what Madeline and two Vancouver  journalists want to challenge in a new collaborative podcast taking  listeners through the centuries of ableism, misogyny and medical  reluctance that leave Madeline and others with post-viral syndromes  without recognition or relief.

“With post-viral conditions, there is a  really critical window where we can course correct and save people from  worsening health if it’s caught early,” said Madeline. “I could have  been even more stable instead of at my current level of deterioration if  my treatments were funded 10 years ago.”

Bateman and Hilary Robertson, co-chair of the ME/FM Society of BC, agree it’s critical patients who get help and stay within their “energy  envelope” in the first two years after developing the illness.

But they say it takes an average of five  years to get a diagnosis of the challenging disease, and patients often  run themselves ragged trying to find relief in the meantime, worsening  their outlook.

“It’s this catch-22: they don’t diagnose you early enough, then they say if you get diagnosed early enough, you  might get better and have a better quality of life,” said Robertson, who  lives with ME/CFS.

The podcast’s title, “I Am Madeline,” is both an introduction and a reality for the audience to ponder.

Helping people understand the illness is  especially important now, the podcast team says, as a growing number of  COVID-19 “long-haulers” face similar challenges from post-viral  symptoms. About 80 per cent of people with “long COVID” are estimated to  meet the criteria for post-viral syndrome.  Dr. Anthony Fauci, who’s headed the U.S. pandemic response, has said  long COVID appears to be similar — or perhaps the same — as ME/CFS. 

New evidence from the United Kingdom suggests about six per cent of people who had COVID-19, or more than two million in the U.K., are long-haulers.

Moreau estimates anywhere from 10 to 30 per  cent of those two million will develop some form of ME/CFS. Bateman’s  Utah clinic has already begun treating long-COVID patients. And advocates hope that the attention — and funding — for research on long COVID will help people with ME/CFS.

The podcast hopes to bring attention to the  oft-ignored set of conditions before it is too late for Madeline and  millions of new patients with similar symptoms to get help.

“It was the case for me, and for many  long-COVID survivors too, that the longer they remain untreated, the  lower the probability they recover,” said Madeline. 

Bateman and Moreau noted new research, with  a focus on people who recently developed the illness, could provide  needed answers and help with diagnosis.

“The biggest crisis, of course, is not  having medical providers to just recognize this illness and intervene  early,” said Bateman.

Telling her story

The podcast was born not just of Madeline’s  desire to save her own life, but also to prevent others from  experiencing the same neglect that she says leaves her with no choice  but to prepare to die.

Madeline was reluctant but decided to  participate after speaking to a close friend and realizing she doesn’t  want to die “even more than I don’t want to do the podcast, that I don’t  want to do the GoFundMe, that I don’t want to have to bare my soul and  beg for my life.”

Podcast host Ash Kelly first covered Madeline’s story for Vancouver’s News 1130 radio stations last summer. Her report, combined with a second article in December, directed enough attention to Madeline’s ongoing GoFundMe  campaign that she was able to withdraw some money to help pay for  treatments and support for the last six months, combined with going  further into debt.

The Ministry of Social Development and  Poverty Reduction said in a statement that “it is deeply upsetting to  hear that this person is so distressed that they feel assisted dying is  their only option.” Kelly reported the minister, Nicholas Simons, had  offered to speak with Madeline directly.

“No one should feel like they have to make a choice to live or die based on their finances,” the statement read.

A government spokesperson said it was  “aware of the challenges faced by those with myalgic  encephalomyelitis/chronic fatigue syndrome.” The spokesperson said  people on disability assistance can access funding to improve their  nutrition and fund some health needs.

After nearly three decades of illness, Madeline worries no one listening to the podcast sees how much she was  robbed of, or the fact that she is a person who matters and builds her  community today.

Robertson of the ME/FM Society of BC says a sense of loss is familiar to people with the illness.

“Many patients are unable to work and so,  you know, it interrupts their career, it interrupts their education, and  it decreases their finances, and many are on disability and they simply cannot support themselves or get better,” said Robertson. National advocacy programs refer to the “missing millions” of ME/CFS patients, who are absent from their communities because they don’t have the support to carry on.

When Kelly first reported Madeline’s story,  she noted the indifference and dismissal of disability justice issues  from readers and newsrooms. The podcast is an attempt to break that  down.

Kelly and her producer Kelvin Gawley  thought the immediacy and connection of a podcast could be a way to  invite audiences to imagine they were Madeline. That her bad luck, poor  treatment, poverty and lack of support could easily fall upon them after  any virus, from cold sores to the novel coronavirus.

“It’s so easy to think of people with  disabilities as ‘other,’” said Madeline. “‘Oh, that wouldn’t happen to  me, they must have done something wrong.’ But if it happened to me, it  could happen to anyone in a minute.”

As Kelly left News 1130 in March and news  reports continued to detail post-viral symptoms of long-COVID survivors,  she felt a podcast could capitalize on the moment “to get an audience  that cares about one thing, COVID, and sneakily hook them.”

“There is a huge opportunity for the  pandemic and our podcast to strengthen our understanding that we are all  potentially going to be disabled at some point in our lives,” said  Kelly.

“Disability is the marginalized group that  everyone has a shot at joining in their lives, and COVID-19 is only  increasing everyone’s chances at it,” Madeline said.

Heartened and infuriated

Without treatments or being able to afford  the right food and supplements, Madeline says, her condition will worsen, and future costs will be higher. 

But she’s been both heartened and  infuriated at how much she has improved with treatments every two to  three days in the last few weeks using the GoFundMe money. Each time she  receives an intravenous injection, it feels like gasping for air after  being stuck beneath the surface of a pool of water.

For the first time in a year, her cell  suffocation symptoms stopped after three treatments in a row. Cell  suffocation, also known as hypoxia, makes someone feel like they can’t  breathe even when their lungs are working fine, because their cells  can’t absorb and use the oxygen they need. It is common among cancer  patients and some with ME/CFS.

“I want to live, and with more support I can,” Madeline said. 

At the same time, if Madeline works too  hard speaking or otherwise advocating for herself, it can trigger a  crash that could send her to hospital, where doctors can’t help her  because they don’t recognize her illness. This increases the number and  frequency of treatments needed to keep her stable and healthy and will  cause her to use her limited funds more quickly.

And after the pressure on her arm from  having her blood pressure taken at the hospital worsened a crash two  years ago, Madeline avoids going to the hospital, and has only been a  few times since. “There is no help for me there.”

Madeline says in an ideal world the  province, which is aware of her situation through multiple meetings with  her advocates and elected officials, would have funded her treatment  and support long before her condition worsened to this point.

“I shouldn’t have to beg for my life,” Madeline said.

When Madeline met with the doctor for MAID, she told Madeline she had seen ME/CFS patients before. 

“It was infuriating that people on the  frontline are seeing that this disorder can kill, and the rest of the  community won’t even acknowledge that, talk about it or address it in  any way,” said Madeline. “MAID isn’t giving up; it’s just being brutally  practical about what’s happening and that it’s because the larger  system has abdicated on my whole disease.”

Robertson isn’t aware of any other ME/CFS  patients who have qualified for MAID in B.C., but says she knows of  several who have died by suicide. “It’s a very desperate conclusion to a  very isolating disease.”

With so many intersections between medical  discrimination, ableism and misogyny, the podcast is also helping Kelly  imagine how storytelling can be done differently, in collaboration and  with increased accountability towards people who are ignored and who the  system was never designed to support. 

ME/CFS, which mostly presents in women for  reasons unknown, was first labelled “hysteria” centuries ago, dismissing  the severity of the disease and women’s pain. Advocates say the illness  continues to be taken less seriously because patients tend to be women.

Kelly said reporting with Madeline was  challenging at her previous job because remaining “objective” in the  face of such an injustice was impossible, particularly as someone who is  neuroatypical and has an invisible disability herself.

“I don’t want her to die, and that  shouldn’t be controversial or stop me from telling her story,” she said.  “If we tell the story well enough, I have to believe that will be  enough to make a difference.”

It’s a lot of pressure to put on herself,  Kelly acknowledges, but it’s also what drives her — and what she  believes should drive all newsrooms and journalists to build the  relationships needed to cover disability justice issues more often and  more rigorously than they do now.

Madeline said the widespread lack of  understanding of disability stands between her and life. Even if  officials are aware of her conditions and her reality, it’s the larger  societal false notion that “it could never be me” that keeps them from  acting. “I fight for me, but purpose is also so important. I am not  alone, not by a long shot,” she said.

Madeline hopes that’s changing in society,  as she sees it changing in her own volunteer work and with the few  friends she has told of her preparations to die. 

Each time she decides to tell someone, she  weighs not wanting to permanently alter her relationships against not  wanting her death to be a surprise to her loved ones. “The ticking clock  taints every moment.”

As she mulls the end of her life, whether  in one month or many years from now, Madeline hopes her fight will help  listeners gain a deeper appreciation understanding their own  vulnerability at the cellular and political levels.

“If we all collectively understood our  vulnerability, is there the ‘other?’ Do all the -isms, like ableism and  racism and sexism, even exist?” she said. “Because then we know all the  vulnerability could be us.”

To follow her journey, you can listen to the ‘I Am Madeline’ podcast here, or visit her GoFundMe page.

— This story was originally published by The Tyee.

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