Last week, I started by talking about the year ahead; let’s read on as I continue my reflections.
The mental load of SCD deserves its own spotlight. Anxiety about unpredictable pain, fears about the next hospital visit, and the social sting of misunderstanding or stigma can drain energy that the body sorely needs for healing.
Coping strategies matter: mindfulness practices that fit my schedule, conversations with a therapist who understands chronic illness, and peer support that validates feelings without sugarcoating the reality of pain.
I’ve learned to name my emotions when they threaten to overwhelm me: frustration, fear, hope, relief, gratitude. Naming them helps me own them and release what doesn’t serve the moment.
A year is a long horizon, but with SCD, planning is not about rigid certainty; it’s about creating a flexible scaffold that supports health, purpose, and joy.
- Appointments: I’ll schedule quarterly reviews with my hematologist and annual checkups that include a broader health screen. I’ll maintain a shared medical summary noting my medication, past crises, and special precautions.
- Medication adherence: A simple pill-box routine, plus reminders on my phone, keeps me on track. I’ll work with my pharmacist to ensure a stable supply and explore alternatives if side effects appear.
- Crisis planning: I’ll create and update a crisis plan that includes clear steps for my family or friends during a crisis, a brief explanation of when to seek emergency care, and a list of medications I carry with dosages.
- Emergency codes: I’ll carry medical alert information that succinctly communicates my condition and critical needs to any caregiver or clinician in an emergency.
- Pacing: I budget energy for the day, reserving capacity for the unexpected. If I have important work or family responsibilities, I split tasks with breaks to prevent stamina collapse.
- Hydration and nutrition: Water in easy-to-reach bottles, electrolyte solutions on hot days, and meals that stabilise blood sugar. I keep snacks that offer quick energy without a crash.
- Sleep hygiene: A wind-down ritual, a dark room, and a noise environment that supports restful sleep are essential for mornings that don’t start with pain or fatigue.
- Accommodations: I pursue transparent conversations about workload, deadlines, and the possibility of remote work or flexible hours when needed. I frame accommodations as a mutual benefit—productive work intertwined with genuine care for health.
- Communication: I’ll prepare a concise summary of my needs for colleagues or educators, including preferred communication channels and who to contact during a crisis.
- Realistic pacing: I set achievable weekly goals and celebrate small wins that keep me motivated without compromising my health.
- Safe travel planning: I map routes with medical facilities along the way, check climate and altitude implications, and keep a compact first-aid kit with appropriate pain relief.
- Accessibility: I choose accommodations with accessible access, quiet environments for rest, and a plan for escalating if pain spikes. I also consider essential documentation that demonstrates my health needs when required.
SCD can strain relationships even as it creates bonds of solidarity. Honest communication, both with those who are close and those who meet you along your journey, matters.
- Communication with loved ones: I practice clear, compassionate conversations about what I’m experiencing, what I need, and how others can help without feeling overwhelmed by the scope of the illness.
- Building a support network: I invest in a circle that includes family, friends, colleagues, and patient communities. Sharing experiences with others who live with SCD in Nigeria and beyond helps normalise the conversation and provides practical tips tailored to climate and culture.
- Advocacy and community engagement: Sharing my story has a purpose beyond personal relief. By speaking openly about challenges with access to care, stigma, and the realities of daily life, I hope to influence understanding and policy in small, tangible ways. This can include participating in community health education sessions, contributing to patient-led groups, or mentoring younger people navigating a new diagnosis.
Looking ahead, I want to pursue goals that nourish both health and joy while acknowledging limits with grace.
- Health aspirations: To reduce crisis frequency, improve energy management, and maintain a steady, sustainable routine. I aim to strengthen mental health practices and maintain a strong support system that encourages proactive care.
- Education and work: To continue professional growth while maintaining balance. I want to be transparent about my needs with mentors and teammates and advocate for reasonable accommodations when necessary.
- Personal growth and joy: To cultivate hobbies and social connections that recharge me—reading, music, and time with loved ones that foster a sense of belonging.
- Boundaries: I aim to recognise when a limit is a boundary worth honouring, not a barrier to be conquered. This may mean reframing what “achievement” means in a year dominated by health considerations.
If you would like to get in touch with me about Sickle Cell, please reach out to me via email: [email protected]. You can also check out my blog: https://www.dailylivingwithsicklecell.com/
My book on Sickle Cell—HOW TO LIVE WITH SICKLE CELL—and my other books are available for purchase on www.amazon.com.
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