Balancing my education goals with my sickle cell needs

In recognition of Sickle Cell Disease Awareness Month in September, the Sickle Cell Disease Awareness Month campaign features a series of stories highlighting the real-life experiences of people affected by sickle cell disease, written in their own words. Follow us on Facebook, Instagram, or X for more stories like this, using the hashtag #SickleCellDiseaseAwarenessMonth, or read the full series.

For me, education wasn’t straightforward. At age 16, I decided higher education wasn’t for me, and I started working. I drifted for many years through various retail jobs: selling electrical goods such as hi-fi systems and radios, selling mobile phones, and working in a large department store. It wasn’t until I was in my 30s that I decided to return to education.

I applied to a college course called Access to Education, with aspirations of becoming a teacher. I completed my nine-month training and was accepted to a three-year undergraduate program. After earning my degree, I thought I would pursue a master’s program to deepen my knowledge and take my understanding to the next level.

Living with sickle cell disease (SCD) has had a profound impact on my educational journey. Knowing how to manage the condition is key to survival and living a full life. There were times I would miss days, weeks, or even months of class time due to pain or chronic fatigue, or I would have to go to the hospital for treatments and surgical procedures.

Though these challenges made it difficult to pursue my goals, I developed strategies to achieve better outcomes and complete my education. I hope these strategies can help others living with SCD.

First and foremost, educators need to know about your condition. From day one, make it clear that you have a condition that is difficult to manage, but that you will do your best with the staff’s support. A supportive school environment helps massively when starting an academic journey. There are specific measures that administrators can implement to better assist students with disabilities or health complications like SCD. These may include:

• A personalized care plan could state that, in the event of an emergency, the university should contact caregivers or family members.
• Allow for flexible hydration.
• Ask for adequate seating arrangements, toilet breaks, or rest breaks.
• Educate all staff members about sickle cell.
• Provide extra support with catch-up revision classes, online sessions, or flexibility with deadlines and timed exams. Avoid labeling students as lazy.
• Provide a safe space for study or relaxation time.

I live in the U.K., and when I applied to study at a university, I was connected with the disabled student services. Departments like this are designed to help students with sickle cell and other conditions get the accommodations they need. Whether you need financial assistance or specific classroom accommodations, look for resources like this to support you. These programs helped me succeed and acquire the assistance I needed.

For me, education didn’t come naturally. It’s hard work, but not impossible. Help is out there, and you are not alone. You can do it and achieve your best life. Good luck.