Mari, a Black Canadian woman with severe myalgic encephalomyelitis (ME), is supported by fellow people with ME in the absence of institutional care.
This essay is part of the Color of Long COVID series, supported by the Disability Visibility Project.
When healthy people become ill, they expect to call a doctor, receive treatment, and recover. When people with myalgic encephalomyelitis (ME) become sicker, they often rely on other sick people for care, in the absence of systemic support.
Mari* is a young Black woman living in Canada with severe ME. Each month, Mari receives a care package from a small group of international peers living with severe ME, including food, medications, and household needs. Mari struggles to feed herself as the exertion of preparing a meal leaves her bedbound with pain and fatigue, so friends send gift cards and research meal delivery services. (*Mari is a pseudonym, used to protect her privacy.)
When social workers abandoned Mari in January 2026, peers with ME listened to Mari’s voice notes and offered support. We listened as Mari tearfully described her fears, while her roommate punched walls in the background in response to Mari’s requests for help.
Like Mari, many disabled people rely on others to meet their most basic survival needs. When adequate support from governments and medical systems is not available, this level of dependency places disabled people at high risk of neglect, exploitation, and abuse.
I met Mari in July 2024 when I joined an informal group chat for severe ME advocacy and support, created by Fran Haddock. Haddock described how people with ME are risking their health to help others in more extreme circumstances: “We simply have nowhere else to turn.” Haddock continues to receive requests for support, but the group is unable to accept new members due to limited capacity.
ME has a devastating impact on cognitive function, so Mari asked the group to help tell her story. Members of the group shared labor to create a GoFundMe, make mutual aid graphics for social media, and organize raffles to help Mari escape abuse. I listened to Mari’s voice notes with the group, read documents that she made for medical providers, and interviewed Mari to help her tell this story. We worked on telling this story for months, with rest breaks, as the cognitive exertion required to recount her story increases Mari’s symptoms.
Mari was kicked out of her mother’s house in October 2019 and was unhoused, sleeping on the ground in an old, dusty building with no heating. Mari recalls waking one morning with snow falling on her from an open window. She was often unable to sleep and kept moving to stay warm in extreme cold. When Mari woke up on New Year’s Day in 2020, she knew something was wrong. “I felt like my body had been tumbled through a washing machine and my chest was stomped on with a steel cap boot,” she wrote.
In the following months, she experienced severe and distressing symptoms, including extreme fatigue, cognitive impairment, fevers, difficulty breathing, nosebleeds, nausea, loss of taste and smell, and facial paralysis.
When Canadian public health officials announced the first presumptive case of COVID-19 in January and described symptoms that mirrored many of those Mari and close contacts had described, Mari knew that COVID-19 had caused her initial symptoms. Had she been able to access COVID-19 testing when she first developed symptoms, it could have changed how she was treated by medical providers, family, and friends.
Mari described episodes following her infection in which she would collapse to the ground, unable to breathe and too weak to stand or move, eventually losing consciousness. She tried messaging friends for help but was unable to grasp her phone or coordinate her fingers to type. This discoordination progressed to a complete loss of movement in her arms and head. Medical providers dismissed her symptoms, and other people who were sheltering in the same building assaulted her when she was unable to communicate clearly.
With distressing symptoms and no formal diagnosis, people in Mari’s life did not take her seriously. “Pretty much everyone dismissed my symptoms early on,” Mari said. “I didn’t even understand them myself.”
Pretty much everyone dismissed my symptoms early on. I didn’t even understand them myself.
Mari
Through most of 2021, Mari was physically unable to leave another unsafe living situation due to the severity of her condition and the demands of navigating multiple flights of stairs. She was continuously exposed to toxic mold, which contributed to significant deterioration in her health.
With no consistent support, she reached out repeatedly to people in her life for help, but many friends dismissed her or withdrew entirely when Mari’s symptoms affected her mood and personality. “I didn’t have anyone close to me who cared enough to help me when I wasn’t being happy and friendly,” Mari said. This pattern is common among people who develop severe ME, who often experience widespread abandonment as their condition worsens.
In September 2021, as her health declined and the physical environment became dangerous, Mari had to escape. With no safe or supported alternatives available from the Canadian government for disability housing, she was forced into another dependent living situation. This led to a new cycle of caregiver abuse in which she remains as of July 2026.
Over the past year, Mari has endured escalating physical violence and emotional abuse, leaving her too unwell to attend medical appointments. When Mari has asked her roommate for assistance with basic care tasks, he has responded by damaging her property, hiding her medication, and destroying doors and locks. Mari has described many sleepless nights spent enduring physical harm on a regular and ongoing basis. “It’s been tortuous abuse,” Mari said. “It’s extremely violent.”
After years of seeking medical care and an explanation for her distressing symptoms, Mari was diagnosed with myalgic encephalomyelitis (ME) in April 2022. She suspects that COVID-19 triggered ME and Long COVID. The U.S. Centers for Disease Control and Prevention (CDC) estimates that more than 90% of people with ME have not been diagnosed by a doctor, especially people from racial and ethnic minority groups. The Canadian Guidelines for Post-COVID Condition recommend outdated and harmful interventions, including recommending exercise during acute infection, going against guidelines about managing ME from health agencies in the U.S. and the U.K.
With no approved treatments and no cure, people with ME must carefully rest and pace to prevent worsening of symptoms, or they risk serious deterioration. Mari has been in a continuous state of trauma and overexertion for six years, while surviving domestic violence — completely at odds with those recommendations.
“As people with ME, we have so little options, so little privileges, we have to accept what we can, even if it’s abusive help,” Mari said. “I didn’t make any big mistakes to cause this situation.”
As people with ME, we have so little options, so little privileges, we have to accept what we can, even if it’s abusive help. I didn’t make any big mistakes to cause this situation.
Mari
In February 2023, Mari was approved for home care services from her province, but assessors revoked her services within a month. Service workers presented a home visit as a routine check-in and asked Mari if she needed additional help. Mari declined, believing they referred to support beyond her existing services — but her response was used to cancel her care entirely. Mari has repeatedly appealed the decision without success.
Support workers promised mental health support and accessible shelter options in late 2025, then abruptly withdrew contact without explanation the next month.
Mari is one of millions of Canadians whose healthcare and home care needs are unmet. In 2022, more than 9% of all Canadians reported unmet healthcare needs, and in 2023, more than 600,000 Canadian adults (2%) reported unmet home care needs, the Canadian Income Survey found.
Like Mari, many disabled people must rely on unsafe or unstable care situations due to systemic gaps in support. A 2025 literature analysis found women with disabilities face domestic violence more than nondisabled women. The authors described how disabled women experience unemployment and lack of accessible housing and services, among other barriers, creating unique vulnerabilities to domestic violence.
People with Long COVID have higher rates of housing instability and report more frequent issues with mold and inaccessibility. A 2026 analysis of written memorials for more than 500 people with ME demonstrates the high levels of clinical neglect, broad institutional failures, and social abandonment experienced by people with ME.
As Mari describes it, “They’re more willing to fund a death than they are to fund a treatment that will allow me to live.” Medical assistance in dying (MAiD) is often the most accessible option within a system that fails to provide sufficient care or investment in treatment, support, in-home care, or safe and accessible shelter.
Mari must escape her current situation to have a chance to improve or stabilize and prevent further worsening of symptoms. As of July 2026, she remains in a fragile state, with limited capacity to meet her basic needs and no stable long-term support in place. Mari has a genuine opportunity to escape caregiver abuse and survive independently, but only with adequate financial support — which we are seeking to raise through fundraising. Most of the donations, comments, and shares come from people with ME or Long COVID.
“I haven’t had any adequate support until I found [peer support],” Mari said in a voice note.
“It really bothers me that those who are sick and struggling have to do all of this for me when there are nondisabled, privileged people who have the energy to help.”
It really bothers me that those who are sick and struggling have to do all of this for me when there are nondisabled, privileged people who have the energy to help.
Mari
Whitney Fox is a Baltimore-based disability advocate living with ME. You can find her on Instagram.
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