Being chronically ill and disabled is a huge part of my identity. Not only because lupus so deeply impacts my life, but because I’m extremely proud to be a part of the illness and disability communities. For much of my life, I felt that my health concerns weren’t taken seriously and claiming these identities made me feel empowered and helped me better advocate for myself and others. It took time, education, and exposure to these communities to get to this place, but it truly is something I’m proud of.
I have always been very open about having lupus. I started college just a few months after my diagnosis and told many of my new friends right away. I was still recovering from the flare that put me in the hospital and was adjusting to new medications and symptoms. It felt important for the people around me to understand why and what I was going through.
After graduating college, I found myself doing advocacy work with the chronic illness community and telling my story publicly. It was scary being so vulnerable about my experience and not sugarcoating it for other people’s comfort. But I realized that speaking so honestly about living with lupus really helped others understand the experience and give them the tools to provide better support. Working with other chronic illness advocates made me feel understood and built up confidence in myself and the importance of my story.
For a long time, I didn’t know I could identify as disabled. I thought that lupus “didn’t count” or that I wasn’t “sick enough” to use that word. Through my advocacy work, I was exposed to many incredible disability organizations and advocates that welcomed me with open arms. Using the word “disabled” to describe myself validated my experience with lupus and helped me be more confident in asking for accommodations and advocating for my care. “Disability” is not a bad word, it’s a natural part of human diversity. I am so proud to be a part of the disability community, to work alongside people who celebrate who they are, and fight against stigma and oppression every day.
Recently, I’ve been struggling with my health a lot. New symptoms, medications, tests, and appointments have been taking up the majority of my time. I feel like lupus is my entire life and am completely overwhelmed. I get angry about all the things I haven’t been able to do because of lupus, the identities it’s kept me from. I try to let myself be angry, grieve, and acknowledge that frustration and loss. I need to remind myself of my other passions, hobbies, and interests and remember that I have things in my life that make me happy and feel good about myself.
Lupus has caused me a lot of pain and hardship. Proudly identifying as chronically ill and disabled does not change that. It doesn’t mean that I’m forcing positivity or that I’m “grateful” for lupus. It’s OK that it is a big part of my identity because it’s a big part of my life. Lupus has heavily impacted who I am and I’m proud of who I am. I hope to always feel that way.
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