Our Odyssey reposted this
Clinical Psychology Graduate Student at Pepperdine University Graduate School of Education and Psychology | Disability and Mental Health Advocate | Future LMFT and LPCC
Living with a #RareDisease sometimes feels like an incredible paradox. On one hand, I have the opportunity to use my voice and my platform to show the world what I am accomplishing despite having a significant physical disability, which gives hope to younger generations and their families. On the other hand, the Rare Disease community’s mindset of “fixing” and “curing” our conditions can be hard to handle when you are trying to learn how to fully accept and love yourself, especially living as a young adult in a society that was not built with you in mind. As of late, I have tried to become a bigger #disability advocate than a rare disease advocate. The disability community focuses on making the most out of life while having a disability. It places the need for “fixing” on society rather than the individual. The majority of us are not the ones who are personally pushing so hard to find a fix or cure because we are just trying to live our lives. Instead, it is the people around us who are pushing so hard. Just imagine what that does to our self-esteem. The Rare Disease community sees it as improving our quality of life, but many of us feel like we are seen as “broken,” “less than,” and “defective.” There also seems to be a complete disconnect between the transition from being a child with a rare disease to becoming an adult with a rare disease. Yes, many rare diseases are fatal and many children who have them do not live into adulthood. Those families are indeed racing against time to save their children. There are many of us, however, who do live well into adulthood and have to learn how to balance normal adult responsibilities (work, school, social life, etc.) with bodies that do not always cooperate with us. Our rare diseases do not simply vanish once we turn 18. There was a time when all I wanted was to be “normal,” but that was when I was 15. I am now 27 and my mindset has changed drastically in recent years, as it should. It’s called #growth. I felt the need to address my feelings about the rare disease mindset because I have not really encountered many similar opinions and I hope I am not the only one who thinks this way. If I am, it would not be my first time advocating for something that is underrepresented and it will certainly not be the last. On this #WorldRareDiseaseDay, I want to challenge those of you who do not live with a rare disease to think about how your mindset affects those of us who are actually living it day in and day out. 💙🧬🦓 Tagging for reach: • Rare Disease Day • Global Genes • National Organization for Rare Disorders • Child Neurology Foundation • Our Odyssey • RARE Revolution Magazine • Effie Parks