For Chronically Ill People, The Path to Financial Security Is Anything But Straight

At age twenty-nine, I sat in my doctor’s office. I’d spent the year relearning to walk, read, and function as an adult again—after battling severe brain inflammation, for the second time in my life, caused by my chronic illness. “Every five to six years, you are likely to get this sick again,” my doctor told me gently.

As I walked out of the office, one worry hovered over me like a storm cloud only I could see. As a single woman without a family to provide me with financial support, how could I possibly stay afloat? 

After that appointment, I began checking my bank account multiple times per day. I rarely go shopping or take vacations, instead pinching every penny in anticipation of the years in which I’m unable to work. I accept nearly all the freelance work that comes my way, squirreling the money away in my savings account. Even at my healthiest, the daily symptoms of my disease prevent me from working full-time. Other people might see a childless woman with no dependents when they look at me. But in reality, I have a dependent: the sickest version of myself. 

Many people in the U.S. see Social Security Disability payments as a cure-all for people who are too sick to work. But, as someone who has both been on disability and written articles about it, I know firsthand that Medicaid and Social Security Disability do not adequately meet the needs of the dynamically disabled.

The obstacles to being approved for SSI and SSDI are substantial and include: needing to be disabled for at least six months before applying and a time-consuming and often expensive application process. At best, being approved for disability benefits results in low payments that force recipients to give up even part time work or live below the poverty line. Chronically ill U.S. residents like me, who spend some years able to work and some years suddenly unable, frequently fall through the cracks. 

My anxiety about not having enough money during the years I can’t work drives me to devour financial vlogs looking for help and advice. I spend hours calculating and recalculating how little I can live on and for how long. I’m terrified of not having enough to support myself when I’m inevitably too sick to work. Meanwhile, my nondisabled peers are increasing their net worth through steady employment and raises, contributing to retirement, and building equity in real estate.

The U.S. is a country that values productivity and assumes a straight path from the start of one’s career to retirement. For those like me whose careers are frequently interrupted due to health issues, this path is less straightforward and effectively prevents us from building wealth. If the financial road that I and other dynamically disabled people travel had a warning sign, it would say: Expect Frequent Stops.

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Meghan Beaudry (she/her) lives with lupus and is a patient advocate for lupus.net. Her essays have been published in NBC Today, HuffPost, and Salon. She is working on a memoir about her recovery from autoimmune brain trauma.