Navigating Work with a Chronic Illness: The Financial and Mental Health Struggles of Sickle Cell Patients

Living with a chronic illness like sickle cell anemia presents unique challenges, and one of the toughest battles is finding a way to balance health, work, and financial stability. While many people with chronic illnesses rely on disability benefits, the reality is that these benefits are often not enough to cover the basic cost of living. I’ve had to work two jobs to make ends meet, but this comes at the cost of my health and well-being.

One of the major reasons I work is to maintain access to health insurance. For people with chronic illnesses, having quality health insurance can be the difference between life and death. In fact, a 2020 survey found that 18% of adults with chronic conditions, like sickle cell anemia, faced difficulties in accessing needed medical care due to insurance issues. This statistic highlights why staying employed for health benefits is crucial to my care. Without it, I wouldn’t have access to the treatments and medications that are critical for managing my condition .

The Financial Strain

The financial strain of living with a chronic illness is something that many people face. Disability benefits, although a lifeline for many, often fall short. In fact, a 2021 report showed that the average monthly disability benefit in the U.S. was just over $1,200—a figure that barely covers rent, let alone other living expenses. Living in an economy where costs for basics like food, rent, and healthcare continue to rise, it’s impossible to maintain a decent quality of life solely on disability benefits .

I’ve had to sacrifice my own body and well-being to go after the life I want for myself. While it’s difficult to balance work and health, I know that without a steady income and insurance, I would struggle to maintain even the most basic quality of life.

The Mental Health Toll

Managing a chronic illness while working two jobs takes a heavy toll not only on the body but also on mental well-being. Studies have shown that people living with chronic conditions, especially those requiring frequent medical treatment, are significantly more likely to suffer from anxiety, depression, and burnout . Constant worry about managing symptoms, balancing work hours, and covering medical expenses creates a cycle of stress that can worsen both mental and physical health.

For me personally, the emotional weight of juggling both my jobs and my health can be overwhelming. Some days, just getting through a shift feels impossible, but there’s no choice when the bills still need to be paid. Mental health and chronic illness are deeply intertwined, and the emotional burden can feel just as debilitating as the physical one.

Limited Job Opportunities for People with Disabilities

Another major issue for people with chronic illnesses is the lack of job opportunities that are truly accommodating. Despite laws like the Americans with Disabilities Act (ADA), people with chronic illnesses frequently face barriers in the workforce. A report by the U.S. Department of Labor highlighted that people with disabilities have an unemployment rate twice as high as those without disabilities, often because workplaces lack flexibility, proper accommodations, or understanding of their needs .

For someone like me, finding a job that allows flexibility to manage my medical needs has been nearly impossible. Many employers either don’t understand the nature of my illness or aren’t willing to adjust working conditions to accommodate my health. This forces many people in my situation to settle for jobs that offer little flexibility or safety, exacerbating their health issues and making it even harder to maintain long-term employment.

The Reality of Working with a Chronic Illness

It’s a difficult balance to strike, and many people with chronic illnesses face this same challenge. The current disability system feels outdated, and it doesn’t account for the rising cost of living or the unique financial struggles that people with chronic conditions face. Many, like myself, must work to sustain a reasonable standard of living, and even then, it’s a constant juggling act between maintaining your health and keeping a roof over your head.

What’s most frustrating is that the system doesn’t make it easy to receive benefits or accommodations. The application process for disability benefits is lengthy, and navigating the bureaucracy feels intentionally difficult . For example, I work too many hours to qualify for disability, but the income from those jobs still isn’t enough to make ends meet. And if I were to stop working or cut back on hours, I’d risk not having enough money to cover my medical expenses, let alone day-to-day living costs.

Advocating for Better Support

This blog isn’t just about me—it’s about the thousands of people who face the same struggles. Whether it’s inadequate disability benefits, limited job opportunities, or the mental toll of trying to manage both work and health, the system is failing us. People with chronic illnesses deserve better support, and that includes revisiting the way disability benefits are structured and ensuring that there are more flexible job opportunities that don’t force us to choose between our health and our livelihood.

In the meantime, it’s about finding small ways to cope—whether through self-care, community support, or even advocating for change in our workplaces. It’s a tough road, but sharing stories like mine is a step toward raising awareness of the everyday realities that so many people with chronic illnesses face.

© WholenesswithinReach, 2024. All rights reserved. This blog and its content are protected by copyright law. Unauthorized use and/or duplication of this material without express and written permission from the author is strictly prohibited. Excerpts and links may be used, provided that full and clear credit is given to Deme @WholenesswithinReach with appropriate and specific direction to the original content.

Disclaimer:

The stories, experiences, and information shared on this blog are my personal views and should not be construed as professional advice. This is my personal journey, and it may not be applicable to everyone. Please consult a professional if you are seeking advice on specific health, financial, or legal matters.