WebMD BlogsLupus

How a Chronic Condition Affects Your Identity

photo of woman looking out window
Erica Lupinacci - Blogs
By Erica LupinacciDiagnosed since 2009June 21, 2022

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.

Join the WebMD Lupus conversation on Facebook.


Photo Credit: Roy JAMES Shakespeare / Photodisc via Getty Images

WebMD Blog
© 2022 WebMD, LLC. All rights reserved.
Blog Topics:
About the Author
Erica Lupinacci

Erica Lupinacci was diagnosed with systemic lupus erythematosus in 2009. She is the co-founder of Suffering the Silence, a 501(c)(3) nonprofit dedicated to leveraging the power of art, media, and storytelling to raise awareness and break the stigma surrounding chronic illnesses and disability. Lupinacci has spoken about life with chronic illness for the Yale School of Nursing, Weill Cornell Medical College, Awesomeness TV, The Mighty, and more. She is an actor and producer living in Los Angeles and most recently co-created & produced Trust Me, I’m Sick, a short docuseries about life with chronic illness. Learn more about her work on her website.

More from the Lupus Blog

  • photo of woman looking in mirror

    How Lupus Shook My Identity

    It’s a revolutionary time in the space of identity. People are coming into the knowledge of the who, what, where, why, and how that makes ...

  • photo of young woman packing suitcase

    How I Prepare for Travel With Lupus

    Traveling with lupus always takes a lot of planning and preparation. Because I never know how I will feel, I have to be ready for any symptom or issue that could pop up ...

View all posts on Lupus

Latest Blog Posts on WebMD

View all blog posts

Important: The opinions expressed in WebMD Blogs are solely those of the User, who may or may not have medical or scientific training. These opinions do not represent the opinions of WebMD. Blogs are not reviewed by a WebMD physician or any member of the WebMD editorial staff for accuracy, balance, objectivity, or any other reason except for compliance with our Terms and Conditions. Some of these opinions may contain information about treatments or uses of drug products that have not been approved by the U.S. Food and Drug Administration. WebMD does not endorse any specific product, service or treatment.

Do not consider WebMD Blogs as medical advice. Never delay or disregard seeking professional medical advice from your doctor or other qualified healthcare provider because of something you have read on WebMD. You should always speak with your doctor before you start, stop, or change any prescribed part of your care plan or treatment. WebMD understands that reading individual, real-life experiences can be a helpful resource, but it is never a substitute for professional medical advice, diagnosis, or treatment from a qualified health care provider. If you think you may have a medical emergency, call your doctor or dial 911 immediately.

Read More