Channeling Confidence As An Advocate

Lately, I've found myself getting lost in curated content for the disabled community. I admire the confidence, creative voice, storytelling ability, and remarkable zest for life that these creators possess. So, I've decided to level up.

Finding inspiration

Since the release of Lizzo's hit single 'About Damn Time', many content creators and celebrities have joined the viral dance challenge that originated on TikTok. Scrolling through my Instagram explore page, I came across Spencer West's (@Spencer2thewest) video and the joy emoted in his dance moves put a big smile on my face.

West uses social media to correct misconceptions about his own disability and shares the accessibility issues that the disabled community faces. Although people with disabilities face a number of barriers to equitable treatment, creators have found unconventional ways to raise awareness and exude confidence while doing it.

Stigmatization and self-esteem

Many sickle cell patients report self-esteem issues and feelings of inadequacy because of health-related stigmatization. The stigmatization of marginalized groups, especially in the rare disease community, often leads to negative attitudes, discrimination, and exclusion. These contribute to a decreased self-worth, but the first step in addressing low self-esteem is boosting your self-concept.

Self-concept is an individual’s perception of who he or she is; it is the ultimate answer to the question, “Who am I?”. It develops throughout the lifespan of the individual. People with healthy self-concepts have a consistent self-image and worth.

Living with an invisible disability like sickle cell means having the ability to change the narrative. I recommend focusing on your abilities rather than your limitations and not getting caught in unrealistic comparisons. Just learn to appreciate all of yourself. Confidence is crucial for success, so learn how to tap into it.

5 ways to advocate for sickle cell with confidence

1. Be aware of your self-talk

   In the book 'Be Fearless: Change your life in 28 days' by Psychotherapist, Jonathan Alpert, he starts by asking the question: Is your narrative for self-positive or negative? The former will encourage you to move forward while the latter will keep you stuck. When I'm afraid I notice how negative thoughts and feelings start to kick in. To counter those inner thoughts, I remind myself that my fears are only imagined and are not real.¹

2. Eliminate social comparisons

   The first time I was asked to speak at a National Institutes of Health (NIH) press conference on curative therapies for sickle cell, I immediately became stressed out. In the back of my mind, I wanted to turn down the opportunity and recommend a known advocate who I thought was much better than I was because she had years of experience and notoriety. I didn't!

   Like Alpert says, social comparisons serve no purpose and are merely excuses that will keep you stuck right where you are. If your mind starts to compare, ask yourself, "How will this help me? Does this move me closer to my goals or further away from them?"

3. Recognize that perfection does not exist

   For years, I watched everyone around me take leaps of faith. Still, I hesitated to approach advocacy because I didn't think I was equipped for the job. Keep in mind that I was a pre-med student for 2 years and have received treatment on 3 different continents. Trust me, I understand sickle cell disease.

   Quite often people don't pursue their goals because they want everything to be done perfectly right. They contemplate their approach and ruminate on ideas until they are filled with so much anxiety, they don't take any action at all. Let's all take a cue from Nike and Just Do It.

4. Know what you have and what you want

   I've always believed that everyone is born with talent(s) but it's up to us to recognize our gifts and perfect our craft. Try to focus on your strengths, not what you perceive as your shortcomings. Then, apply them to your goal. Knowing what you want is having an overall sense of direction and clarity; you might not know the secondary steps (the big picture) but you have a sense of the primary steps (the smaller details) and that builds confidence.

5. Show up for yourself, advocate with confidence

   I read a quote by Phyllis Reagin, CEO of The Coach's Table that resonated with me, it said: "My increase in confidence was a slow build of pushing past my discomfort and showing up for myself." Let me tell you, there is something quite powerful about a strong belief in self and getting comfortable with the uncomfortable. Try not to stand in your own way. Cast doubts aside, use your voice, and don't let irrational fears cripple your ability to show up and speak up.