How caregiver support helped me achieve financial independence

One thing I’ve always wanted to achieve, despite living with sickle cell disease (SCD) and experiencing multiple complications, is financial independence. I wanted to earn my own income, make my own financial decisions, contribute to my family’s needs, and afford things that make life meaningful to me. However, achieving and maintaining that independence has required considerable determination, adjustments, and support.

Living with SCD comes with physical, emotional, and financial challenges that can affect nearly every aspect of life. My desire to remain financially independent became even stronger after I developed significant mobility limitations because of avascular necrosis, a bone complication of SCD. As the condition progressed, my mobility deteriorated, and I eventually became reliant on a wheelchair.

Living with a disability here in Nigeria presents additional challenges because social protection, disability benefits, and workplace inclusivity are limited. Consequently, I became increasingly aware that I needed to find ways to sustain myself financially, even if my health eventually prevented me from continuing conventional employment. Nevertheless, I didn’t want my physical limitations to determine whether I could earn an income or build a meaningful professional career.

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For many years, I understood financial independence primarily through my medical career. Becoming a physician gave me an opportunity to earn an income while doing work I genuinely valued. However, developing additional complications, including chronic pain syndrome and chronic fatigue syndrome, made maintaining the demands of clinical practice increasingly challenging. Sometimes, pain and fatigue significantly affected my quality of life and kept me indoors.

Rather than abandon my professional ambitions, I began exploring alternative ways to use my medical knowledge and communication skills. This led me into remote health communication work and opportunities in medical writing, medical reviewing, and health editing.

Working remotely became particularly valuable because it reduced the physical demands of commuting and working in a conventional office. It also expanded my opportunities beyond Nigeria, allowing me to collaborate with international organizations.

Today, I combine clinical medicine with medical writing, reviewing, editing, and patient advocacy. I have also established organizations through which I support people living with SCD and their caregivers. Diversifying my professional responsibilities has helped me develop different income streams and reduce my dependence on a single source of employment.

Maintaining financial independence doesn’t mean doing everything without assistance. Over the years, I’ve learned that accepting support from people who care about me doesn’t diminish my independence or make my achievements less meaningful.

My parents have been instrumental in helping me pursue my education and professional ambitions despite my mobility limitations. Because of my physical challenges, completing medical school would have been considerably more difficult without their support. They provided me with a car and a driver to help me commute to and from school, making it possible for me to continue my education despite the accessibility challenges I encountered.

Beyond helping me complete medical school, my parents have consistently supported my professional aspirations and encouraged me to pursue opportunities without allowing my disability to define my capabilities. They also helped me hire my first personal assistant, whose support made managing some everyday activities easier.

My family members remain my biggest cheerleaders, consistently reminding me that my physical limitations do not make me incapable of achieving my career goals. Their support has helped me retain control over my decisions while receiving assistance with activities that my mobility limitations make difficult.

I have also learned the importance of communicating with caregivers about what I can manage independently, where I need assistance, and which decisions I want to continue making for myself. For me, meaningful support should enable independence rather than unintentionally take away someone’s sense of control.

Redefining financial independence

Living with SCD has taught me that independence does not necessarily mean accomplishing everything without help. Sometimes, it means finding alternative ways to achieve your goals, using available resources, and accepting assistance that makes participation possible.

Although I continue navigating healthcare expenses and fluctuations in my physical capacity to work, I am proud of the professional life I have built beyond conventional clinical practice.

My advice to people living with SCD and their caregivers is to avoid comparing one person’s circumstances with another’s. SCD affects everyone differently, and our abilities, limitations, and opportunities are not identical. Explore your abilities, identify opportunities that accommodate your health needs, and consider diversifying your professional skills.

Above all, resilience does not mean ignoring your limitations or refusing help. When complications make one path difficult, consider another route toward your destination. You may need to adjust your plans, acquire new skills, or accept support along the way, but your diagnosis and disability do not have to define the boundaries of your aspirations.

Note: Sickle Cell Disease News is strictly a news and information website about the disease. It does not provide medical advice, diagnosis, or treatment. This content is not intended to be a substitute for professional medical advice, diagnosis, or treatment. Always seek the advice of your physician or other qualified health provider with any questions you may have regarding a medical condition. Never disregard professional medical advice or delay in seeking it because of something you have read on this website. The opinions expressed in this column are not those of Sickle Cell Disease News or its parent company, Bionews, and are intended to spark discussion about issues pertaining to sickle cell disease.