This article re-counts the story of 37-year-old Julia Aruya, with emphasis on some of her education and employment experiences.
Julia was the only one of four children born with Sickle Cell Disease (SCD) in Lagos, Nigeria. Her parents had always emphasized the importance of a good college education. They encouraged her to seek knowledge because it brings power and empowerment is, in turn, the best way to prepare for a difficult life journey. These were sound teachings since a parent’s fierce love and sacrifice cannot shield a child from the harshness of the world. Offensive preparation through education made Julia feel like she could take on the world. However, she would soon discover that the world can be an unfriendly place for an employee with a serious illness.
After graduating from college, she worked for a major fashion retainer. Unfortunately, she was absent from work 30-90 days in a year due to her illness and pain crisis. Though she worked hard and ahead of schedule, promotion was out of the question due to her extensive absence(s). Inflexible corporate policy dictated that if you are not at work 24-7, with minimal absence, you are not promotable.
After several years, she abandoned hope of a promotion and decided to change her career by starting a small home-based business to supplement her income. Notably, her education gave her an alternate choice as to how to earn a living. She is also obviously resourceful and industrious, not looking for a handout from anyone. We applaud her entrepreneurial spirit and determination to make a living for herself. Problem-solving, ingenuity and ability to either identify or create opportunities are great attributes, particularly for someone who has the added challenges of a serious illness.
Julia’s home-based business was a success, generating more income than anticipated. Interestingly, a friend recruited her for a multi-million-dollar world-wide company. Despite the company’s size, it still lacked tolerance for an SCD patient. Julia suffered significant mental anguish due to the company’s ignorance and intolerance about her health situation. Her difference was seen as a financial hindrance to which it should not cater. How dare Julia and others like her be different and unique! Companies so often only focus on their mandate to produce profit for shareholders. Many also cannot envision (or do not want to take the time to research) how your unique situation, skills, education and experience can enhance their company in spite of your health. The unfortunately result is that you will not feel welcome, appreciated or be positioned to develop and excel.
Julia has become skilled at riding out and overcoming pain crises. She has great mental fortitude and spiritual strength. Her ability in this area leads one to ask whether she can train or coach other SCD patients regarding pain management and other obstacles.
Julia’s daughter, Catherina, also has SCD and has experienced ignorance and intolerance at school. Her teacher commented to Julia that she is such a smart child, but is always lying about her stomach and back hurting her. She went on to say that her frequent attendance at the nurse’s office is disruptive to the class. These comments caused Julia to cry, realizing that the same ostracism and rejection that plagued her life would also plague that of her daughter. It was clear that her daughter would have many battles to fight.
This part of Julia’s account leads one to wonder whether the school nurse could shed any light on the situation by explaining the disease to Catherina’s teacher. As this cannot readily be confirmed and in light of the stated conclusion drawn by her teacher, we are led to believe the school nurse was, at best, not helpful, and at worst, ignorant of the symptoms and other challenges of the disease. Our FREE ebook, “Achieving Health Victory Through Patient Advocacy!” contains excellent information and resources as to how family, friends and/or professional patient advocates can assist patients to receive optimal health care and results from medical service providers working in different arenas.
Julia encourages other SCD patients to embrace healthy self-esteem while rejecting scorn and disdain from those who would ostracize them due to their illness. She further charges them to ensure that they get a good enough education such that they have a career, not only a job. She was, in essence, giving them the same admonition that her parents gave to her. Businesses are often disloyal to even relatively healthy individuals, including those who can devote large amounts of time and energy to their business. Therefore, their “here today, gone tomorrow” attitude is not something that an SCD patient should take lightly. The strong encouragement to position oneself for multiple jobs over one’s work life is prudent.
Our ebook, “Supporting Children and Youth With Sickle Cell Anemia” offers some valuable tips and resources to help young people who suffer from this disease to excel scholastically as well as navigate obstacles and realize opportunities in wider society.
Julia wisely states that SCD patients, their families and advocates must let the world know about this disease, educate the corporate world about it and speak to high, influential levels of government about it. Her conviction is well placed as she notes that if ill people are not careful, they can easily live on the verge of poverty just because they have a disease. It is a sad but common state of affairs when vulnerable people must look out for themselves rather than being protected and supported by individuals, institutions and systems in broader society. The grave inequality and injustice of that fact should not be dismissed or ignored.
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