For sickle cell patients, developing self-advocacy skills starts in childhood
These skills can build confidence and reduce feelings of helplessness
Written by |
Living with sickle cell disease requires more of a patient than just managing symptoms. One major necessity is the ability to effectively communicate one’s needs. Self-advocacy is a lifelong skill that enables people with the disease to effectively navigate healthcare systems, educational settings, workplaces, and personal relationships. When nurtured early and strengthened over time, self-advocacy can empower patients to take an active role in their care and their lives.
People with sickle cell disease often must interact with healthcare providers, teachers, and employers more frequently than their healthy peers. Additionally, a sickle cell diagnosis can, unfortunately, lead to negative stigma and erroneous preconceived notions about patients, through no fault of their own. Therefore, to combat this, I believe it is essential that parents and caregivers invest time in developing self-advocacy skills in children with the disease.
Self-advocacy can help people explain their condition, ask informed questions, and make decisions that align with their goals. It also builds confidence and reduces feelings of helplessness that can come from having a chronic illness. It can result in better pain management, appropriate accommodations, and respectful treatment. Admittedly, it is unfair that the quality of treatment might depend on a patient’s own ability to advocate for themselves, but that is the reality for sickle patients around the world. That’s why I think it’s important for parents of children with sickle cell disease to prepare them for this reality.
Laying the foundation during childhood
Self-advocacy begins with awareness. For children with sickle cell disease, this starts with providing them with age-appropriate information about their condition. Parents and caregivers can play a key role in this by encouraging children to describe how they feel and participate in simple choices about their care.
Through my own advocacy over the years, I’ve met adults whose diagnosis was kept from them when they were children. This can cause anger and resentment later in life. Additionally, these adults had to learn about a complex disease in a short period compared with others.
Small steps can make a big difference. Children can practice telling a trusted adult when they are tired or in pain or explaining to a teacher why they need water breaks or rest. Caregivers can model advocacy by speaking respectfully with healthcare providers and involving children in conversations during appointments. Over time, this teaches children that their voice matters.
Strengthening skills during adolescence
Adolescence is a pivotal period for developing independence. Teenagers with sickle cell disease can take on more responsibility for their health, such as by tracking symptoms, learning about medications, and asking questions during doctor appointments. Encouraging teens to speak directly to healthcare providers — with parental support — can prepare them for care as adults.
This stage also includes advocating in school and social settings. Teenagers may need to explain their needs to teachers, coaches, or friends. Learning how to communicate boundaries and ask for accommodations fosters self-respect and resilience. Peer support groups and mentorship from older people with sickle cell disease can be particularly impactful during this phase.
Apart from scheduled appointments, much of a sickle cell patient’s interactions with healthcare professionals occurs during emergency situations, in which the patient might already be in pain. Pain can be a major hindrance to effective communication, particularly in an environment that lacks empathy or compassion for a patient in pain. I always encourage parents to practice exercises with children so that they are adequately prepared for such an environment.
Transitioning to adulthood
The shift from pediatric care to adult care can be challenging. Strong self-advocacy skills can help ease this transition. Young adults benefit from understanding their health history, insurance coverage, and ways to navigate healthcare systems. Knowing how to prepare for appointments, request second opinions, and seek support services can lead to better outcomes.
Beyond healthcare, self-advocacy extends to college, careers, and community life. Adults with sickle cell disease may need to request workplace accommodations, manage disclosure decisions, and balance health with personal goals. Confidence in self-advocacy fosters independence and opens doors to new opportunities.
Some hospitals may have transition programs for teenagers with sickle cell disease to help prepare them for adult care. I would encourage parents and caregivers to inquire about these programs when the child is young, perhaps around 10 years old. If a child’s hospital doesn’t have an established program like this, parents might consider advocating for one to be created. (The European Sickle Cell Federation has good resources for this.)
Self-advocacy isn’t limited to developing a single skill, but rather a growing list of abilities that evolve with age and experience. From childhood curiosity to adult confidence, each step empowers people with sickle cell disease to live fuller, more self-empowered lives.
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.
Leave a comment
Fill in the required fields to post. Your email address will not be published.