Before anyone living with Sickle Cell Disease embarks on a new endeavour, whether it’s a new career, academic journey, business idea, creative project, or a new chapter in life, there is one crucial foundation that must be laid first: strengthening the mind. Not the body, not the finances, not the connections.
The mind is powerful because for people living with SCD, the greatest battles are often fought quietly, internally, long before any visible action takes place. The mind is the centre of our thoughts, beliefs, emotions, and decisions, shaping how we interpret experiences and respond to challenges. It is powerful because what we repeatedly think and believe influences our confidence, resilience, actions, and ultimately the direction of our lives.
Living with SCD means living with uncertainty. It means waking up some mornings unsure how much energy you will have. It means planning carefully, knowing that pain, fatigue, or hospitalisation can arrive without warning. It means carrying memories of past crises, past disappointments, and past moments when your body forced you to stop before you were ready.
Many people with SCD grow up hearing subtle messages: “Don’t push yourself too much.” “Be realistic.” “Maybe that’s too ambitious.” “Focus on managing your health first.” While often well-meaning, these messages can slowly shrink a person’s sense of possibility.
Before you even try, a voice in your head may say: “Who do you think you are?” “You’ll never finish.” “You’ll get sick halfway.” “Don’t set yourself up for disappointment.” All these may be true, but raising above the voice matters. This is why resilience, for someone with SCD, begins in the mind. It begins with learning to speak to yourself in a different way.
Resilience is not something you either have or don’t have. It is something you practise. It starts with repetition. With learning to say, again and again: “I can do this.” “I am capable.” “My illness does not define my limits.” “I am allowed to dream.” “I am allowed to try.” “I am allowed to fail and try again.” These statements may sound simple. But for someone who has lived through years of physical vulnerability, they are radical.
They push back against fear. They challenge internalised doubt. They resist the narrative of limitation. Many people with SCD have had their confidence shaken by systems that did not believe them, support them, or accommodate them. Over time, this can lead to self-censorship, quietly lowering expectations to avoid pain.
Resilience means refusing to shrink. Not recklessly. Not arrogantly. But courageously. It means choosing to hope even when experience suggests caution. One of the biggest misunderstandings about resilience is that it means pretending everything is fine. For people with SCD, this misunderstanding can be dangerous.
True resilience is not denial. It is honesty. It is being able to say: “Yes, this is hard.” “Yes, I am afraid.” “Yes, I get tired.” “Yes, sometimes I feel overwhelmed.” And still saying: “But I will not give up on myself.”
SCD can damage self-trust. After repeated health setbacks, people may begin to doubt their own judgement: “Can I really commit to this?” “Will my body let me?” “Am I being foolish?”
This loss of self-trust is understandable. But it is also something that must be healed. Resilience involves rebuilding trust in yourself, not in a perfect body, but in your ability to adapt. It means recognising: “I may not control my health completely, but I control my response.” “I know how to adjust.” “I know how to seek help.” “I know how to rest and return.” You are not fragile. You are flexible, and flexibility is a form of strength.
For many people living with SCD, faith, spirituality, and reflective practices are central to resilience. Prayer, reading Scriptures, meditation. Journaling and quiet reflection are important. These are not escapes from reality. They are tools for survival. They provide perspective when fear dominates; peace when anxiety rises; hope when energy fades; and meaning when suffering feels senseless.
Resilience grows when the soul is nourished alongside the body. When people take time to remind themselves: “I am more than my diagnosis.” “My life has purpose.” “My story is not over.” This spiritual grounding often becomes the emotional scaffolding that holds everything else together.
Resilience means choosing your own pace. It means understanding that progress does not have to be fast to be real. Achievement does not have to be public to be valuable.
Consistency matters more than intensity.
Success could look like: completing a degree over a longer period; building a project slowly; working part-time; pausing and restarting; and finally changing direction. These are not failures. They are intelligent responses to reality.
Yes, grief. Grief for the body you wish you had. Grief for the energy you imagined. Ignoring this grief weakens resilience. Facing it strengthens it. You cannot build a new future while carrying unspoken sadness from the past.
Resilience grows when you allow yourself to mourn and then move. No one builds resilience alone. Supportive friends. Understanding mentors. Other people with SCD. Faith communities and professional allies. These networks remind you, and they reflect your courage when you forget it. Resilience multiplies in the community.
At its core, resilience is the decision to try again and again despite uncertainty. Not recklessly. Not without planning. But with faith, wisdom, and self-respect. For someone with SCD, choosing to begin something new is already an act of bravery.
It is saying: “My illness does not get the final word.” “My dreams still matter.” “My future is still open.” That choice made quietly, internally, is the first victory. Before applications. Before funding. Before business plans. Before enrolment. Before public announcements. It begins in the mind. With one sentence: “I can do this.”
If you would like to get in touch with me about Sickle cell, do so via my email address: [email protected]. And do 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.
