My Patient Story
Congressional District: CA34
Chronic Pain, Gastrointestinal Disease, Genetic Disease, Immune Disease, Mental Health, Neurological Disease, Rare Disease
Issues and Challenges
Skyler has encountered: Access to Expert Providers, Access to Medicine, Insurance Issues, Medicare / Medicaid Issues, Mental Health Access, Rare / Underserved Disease, Surprise Billing, Transportation, Abuse (Mental, Physical, Elder), Disability, Discrimination (nonmedical), Invisible Illness, Medical Devices, Step-Therapy / Fail First, Transparency in Health Care
Hi, my name is Skyler Lin, and I am a graduate student currently studying occupational therapy at the University of Southern California. As a member of the patient rising community, one of my goals is to advocate for the chronic illness community. I am also an individual with multiple chronic illnesses specifically EDS, MCAS, POTS, and narcolepsy.
I want to talk to you about ableism, defined as harmful and often false stereotypes about disabled folks.
When I first was diagnosed with my chronic illnesses, I would often be told by family members, “are you sure that you can do this? What about giving up and just pursuing something more realistic?” When it came to discussing my goal to become an occupational therapist. Sometimes I would hear from other peers who called themselves my friend, “you’d be lucky to find someone willing to deal with all of your mess.” Even more hurtful was the “omg, I would unalive myself if I were in your position.” There was an overwhelming message that somehow, I was broken, my diagnoses were essentially all people saw me as, and I shouldn’t even exist.
I don’t think any of these individuals meant any harm in what they were saying and there lies the problem with ableism. Ableism and the implicit assumptions that come with it often work to restrict and keep disabled folks from their full potential. It falsely tells people that because of their chronic conditions they would never be good enough. I was told I would never make a good graduate student which turned out to be a lie. I was accepted into the number one national ranking program for occupational therapy and have sustained an academic standing of excellence. This is precisely why; I feel that we need to continue to strive to end ableism by checking our biases and assumptions and learning as much as we can.
So please, listen to our experiences in person and on social media. Follow our social media platforms. Please recognize that I have my diagnoses, but I am not them. I am a friend, sibling, singer, OT student, researcher, advocate, and so much more. Finally, in engaging with our experiences and remaining open to learn, remember that we are still human. Every bit as deserving of the same rights, dignity, love, and care as anybody else.
My Motivation and Inspiration
My motivation is to empower others to be able to live their lives and thrive. The chronic illness and disability community continues to inspire and remind me that representation matters as does education and advocacy! Everyone matters and deserves a chance to live to their fullest potential.