In San Jose, California, 19-year-old Arabella G. helps care for her mother, who has fibromyalgia, along with other health issues. Arabella currently shares a two-bedroom apartment with her boyfriend and five-month-old, her sister, her sister’s boyfriend, and her mom. Throughout much of the pandemic, California provided rental assistance for low-income families. With that help, Arabella says her mom’s disability benefits were enough to just make ends meet each month. But once the state’s pandemic assistance program ended at the end of March 2022, the family struggled to cover the $3,000 monthly rent. So her mom tried to get a job to bring in some income. “I really don’t think she gets her disability [payments] anymore because she tried to start working,” says Arabella. “But the only reason why she tried to start working is because the disability wasn’t enough to cover rent.”
Fibromyalgia, which causes severe, widespread muscle and joint pain, as well as fatigue, makes consistent employment an uphill battle. Arabella remembers her mom once had a sudden flare-up on her second day of work. She lost that job immediately. On the day of her interview with Teen Vogue, Arabella’s mom missed work because she woke up in so much pain. Her inconsistent employment status makes health insurance coverage an additional complication.
“At the end of the day, if you’re on disability, it’s for a reason,” says Arabella. “You’re not capable of going to work because of a health concern that you have. It’s there to help you, but if you’re getting disability [benefits] and it’s not enough, then you’re struggling. But you also can’t work because then your disability is gonna stop. So it’s like, everything’s kind of against each other when they’re supposed to be helping.”
It’s not uncommon for people navigating disability benefits to have to choose between unfavorable options. For Arabella’s mom, those include occasionally relying on her children to cover living expenses, barely making ends meet while receiving disability benefits, or finding a job that provides a better income, which would make her ineligible for disability benefits and at risk of having inconsistent health insurance coverage because fibromyalgia’s unpredictability makes consistent employment a challenge. For Lizzie’s mom, the financial trade-off built into the eligibility requirements is a particular point of frustration. Her mom is only eligible to receive her Medicaid-provided disability benefits if she has less than $2,000 in assets as a single applicant. “This meant that I could never save money for college for my kids, or buy a new fridge, or [pay for] major car repairs,” Lizzie’s mom wrote to Teen Vogue via email: “Impoverishment is literally a requirement.”
When Sofia was in high school, her aunt was diagnosed with bone cancer and had to stay in a nearby hospital to receive treatment. Sofia met with a social worker who connected the family to much-needed resources and assistance after hearing how difficult it would be for them to afford her aunt’s care. Sofia describes finding out that her aunt would be able to stay in a hospice for free as “the biggest blessing.” Sofia made sure to visit her aunt, who she said was “like my best friend,” nearly every single day, translating for her and making sure she was alright.
“The day she passed away in hospice is the day I didn’t go,” Sofia tells Teen Vogue through tears. “It was really hard for me because I just felt so much guilt because I felt like it was my obligation to be there, like, all the time. And then the day I don’t go, it’s the day she passes away. To watch someone deteriorate like that from cancer, it’s horrible. But especially because she didn’t understand English and some of the [hospice staff] were really harsh.”
“If we had disability [benefits], like, enough to receive enough help, we could live a normal life that any family deserves,” says Sofia. “Maybe we could have been a lot closer today. Maybe we could have actually eaten dinner for once together, you know? Maybe we could have been together more if we just received more help. It’s a bummer that it doesn’t work like that.”
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