I just parked, my physical therapist texted. Will be walking up shortly.
I opened my second-floor apartment window and stuck my head outside, scanning the alleyway below for my physical therapist’s blond hair. I caught sight of him just between my building and the adjacent flower shop. “I’m over here!” I yelled.
“I see you,” he called back. He positioned himself beneath my window, where I tossed the key to my front door into his outstretched hands.
This was the unconventional method I had been forced to use to let people into my apartment for the past three months. Before then, I’d been able to walk up and down the 20 stairs to my apartment.
Then my neuromuscular condition progressed, landing me in the hospital for nearly a month. When my doctors discharged me, this condition and several other co-occurring chronic illnesses, including myalgic encephalomyelitis (ME) and dysautonomia, had become more severe. I was also discharged from the rehab facility with a SARS-CoV-2 infection I’d caught there, which left me mostly bedbound. Even just trying to read a book or send a text to a friend became too exhausting.
Not long after, I lost my job of four years working in homeless services. I also became trapped in my inaccessible home, no longer able to walk or climb stairs.
My predicament was not unique. A 2024 study estimated that nearly one-fourth of people with disabilities in the U.S. live in inaccessible buildings with no elevator and at least one flight of stairs, making it much more difficult — if not impossible — to participate in the community. This includes people with Long COVID and other infection-associated chronic illnesses like postural orthostatic tachycardia syndrome (POTS) and ME, who may not only be trapped at home due to the severity of their conditions but also require mobility aids such as wheelchairs, walkers, and stretchers to get out the door.
The 1988 amendments to the Fair Housing Act were supposed to address inaccessibility in housing by requiring buildings constructed after 1991 to meet certain accessibility requirements. In practice, however, less than 1% of the nation’s housing stock was fully wheelchair accessible as of 2022, most of it financially out of reach to people with disabilities, who often cannot afford the high prices.
These housing accessibility issues are compounded for racially and economically marginalized people in our communities, who must also navigate racist leasing practices and source of income–related discrimination. Organizations and advocates for people with Long COVID and related diseases therefore must fight for housing accessibility if they wish to improve the lives of those of us who are most marginalized.
Social services that don’t help
“I’ve applied everywhere, but nowhere will accept my application,” I told my physical therapist one day, after he tried to help me unsuccessfully climb the stairs.
My legs had given out after just one step up. My physical therapist had to hoist me back into my wheelchair, and I still felt dizzy, weak, nauseated, and short of breath. I couldn’t push through these debilitating symptoms every time I needed to leave my home.
“I can see if we can send a social worker,” my physical therapist said. My former coworkers in homeless services had offered similar support. They regularly forwarded me links to affordable housing programs, such as Section 8 and project-based vouchers, federal housing initiatives that would’ve adjusted rent to 30% of my income.
While all these people were well meaning, their suggestions did not help me.
My experience as a social worker gave me knowledge of the existence of affordable, supposedly accessible housing. In my former job, I helped my city build new programs for homeless youth and trained homeless services staff on regulations. Yet this knowledge did not allow me to apply to closed waitlists, reduce the hours I had to spend fighting through severe fatigue to fill out paperwork, or speed up the “indefinite” wait time one city employee had quoted me on the phone as an estimate for a public housing unit.
Frustrated with the forever-closed waitlists, I turned to a different affordable housing program called the low-income housing tax credit program (LIHTC), also known as Section 42.
Yet this knowledge did not allow me to apply to closed waitlists, reduce the hours I had to spend fighting through severe fatigue to fill out paperwork, or speed up the “indefinite” wait time one city employee had quoted me on the phone as an estimate for a public housing unit.
The long wait for LIHTC housing
Section 42 housing is a federal affordable housing program that provides tax credits to developers who reduce rent for certain units in otherwise market-price buildings. In theory, the program should increase access to affordable housing for people like me.
In some states, the program operates much like other affordable housing programs, using waitlists that rank or prioritize people for housing based on need. Others offer affordable housing through a lottery system.
New York has a lottery system, and its “demand hugely exceeds the supply,” said Miranda DeNovo of Long COVID Safety Net. “I’ve been applying through the lottery system for seven years and still haven’t gotten an apartment.”
While a centralized system can be inequitable, in other cases, like my own experience in Madison, Wisconsin, there was no city or state authority overseeing the tenant selection process for most LIHTC housing. I had to apply directly through landlords to every individual property, which created an environment rife with unchecked disability and income discrimination.
Rent for LIHTC housing is usually much higher than rent for other affordable housing programs and is not adjusted to a tenant’s actual income, so landlords can still set minimum income requirements. In Madison, they almost always do. I quickly learned that landlords could still deny an application if the tenant’s income — such as disability benefit payments — was not two to three times greater than the rent.
Poverty and severe disability should have given me priority for wheelchair-accessible units in the LIHTC program. Instead, poverty and severe disability practically disqualified me from the only available housing I could afford or access.
My friend who lived in a LIHTC building forwarded me her landlord’s contact information the day an affordable unit became available. But the landlord insisted I come to the property in person.
Over email, I explained that I could not come because of my apartment’s stairs. After hearing I was too sick to leave my home, she stopped responding to my emails. Property after property, this happened over and over.
After hearing I was too sick to leave my home, she stopped responding to my emails. Property after property, this happened over and over.
The path to a new home
In February 2025, half a year after my discharge from the hospital, I finally moved out of my second-story apartment. A landlord at an LIHTC property — the only one who had allowed me to send all paperwork over email — had finally accepted my application. Even so, my acceptance was hardly a stroke of luck. It was the eighth property I had applied to, and I had only seen the listing before anyone else because I searched online at 9 a.m. every day for months.
In the end, it was my own costly persistence that allowed me to move. Yet my persistence was a privilege most people with severe ME don’t have. Looking online every day for housing and completing hours of paperwork is simply not feasible for people whose illness often robs them of the energy required to read, move their muscles, or communicate.
Advocacy organizations for people with Long COVID and related conditions should direct more attention to the economic realities that threaten members of our community with housing instability in the face of severe illness, while others with more privilege are able to think primarily about access to care and cure. And when it comes to increasing access to housing, they should join forces with housing and homelessness advocacy organizations. In my experience in the field, housing organizations often remain disconnected from disability-related advocacy and may harmfully prioritize forms of help grounded in self-sufficiency rather than deliver the material resources actually required for people to survive.
Finally, as the Trump Administration prioritizes funding for the LIHTC program — known to be ineffective and inadequate — at the expense of other more deeply subsidized affordable housing initiatives, people with Long COVID need help with the administrative burden of these programs in the meantime. Advocacy efforts should also call for ways to apply online, the end of minimum income requirements, and other measures to increase accessibility for applications.
People like me with Long COVID and ME deserve more support in finding accessible, affordable housing, and more of us should have the privilege to experience the same relief I felt the day I finally moved into my first apartment with an elevator.
I marveled at my newfound freedom to roll in and out the front door. Half a year trapped upstairs had deprived me of stimuli outside my four bedroom walls. Every experience outside of them now felt electric, new. I rolled down from the third floor of my new home, out the automatic front door, and rejoiced at the cool air on my skin. I rolled back inside. I felt a rush of grief as I watched my hands, blue from the winter air, flood red with warmth again.
People like me with Long COVID and ME deserve more support in finding accessible, affordable housing, and more of us should have the privilege to experience the same relief I felt the day I finally moved into my first apartment with an elevator.
Rachel Litchman is a cartoonist, writer, and consultant who primarily covers disability, healthcare, and housing policy. She has comics and writing published in The Washington Post, Tone Madison, Disability Debrief, STAT News, and other places. You can find her on her website racheldl.com or on Instagram as @racheldlart.
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More commentary articles
- I worked in homeless services for years. It didn’t help me find accessible housing when I got Long COVID.
- The U.K.’s plan for ME has failed us. Members of parliament must step up.
- Work until you disappear: Long COVID ensnared me in an exploitative health system
- We must free Long COVID and the people living with it from the mind-body trap
