Patient Blogs | Lupus
What I Wish People Knew About Lupus
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Sadly, there is so much of my experience of living with lupus that people do not understand. It’s very hard to comprehend what it would be like to live with a chronic illness if you’ve never experienced anything like it before. I’ve always struggled with how to communicate and help others better understand what my life is really like with this illness, and there are a few key things that I wish people knew about living with lupus.

My health can change at the drop of a hat. I can feel completely fine one minute, and the next, I can be in extreme pain. It’s infuriating that it can change that fast and it makes planning and doing activities very difficult. It means I have to cancel plans at the last minute and always be prepared to say no to things I really wish I could do. This doesn’t make me flaky or a bad friend, it just means I have to prioritize my health.

Pushing through pain or a certain symptom in order to attend an event has the potential to put me in a flare-up or make me sick for weeks. I always have to balance what I think I can push through and what I can’t. But that doesn’t mean that just because I’m out and doing something that I’m feeling well. Most of the time, at any point in the day, I’m experiencing some symptom to some degree, but I’m able to exist with it for that time period.

Being chronically ill can be extremely isolating. Even though I’ve worked hard to connect with others with chronic illness, I often feel alone and misunderstood. Especially now, during the COVID-19 pandemic, I’ve really struggled with my relationships, with my friends, and family. Because I am extremely limited in my ability to see people and do activities, I feel like I’m living in a different world than the people who are living “normally,” and it’s hard to relate to each other. It can be really painful to feel like people don’t respect or understand what I’m going through, and I struggle not to take it personally.

Living with lupus is a full-time job. Not only am I managing my symptoms every day, I am also attending appointments and handling administrative tasks. Taking care of myself is a job on its own – noticing what symptom I’m experiencing, choosing what medication or treatment is best to alleviate it, or deciding whether it’s a symptom I can manage on my own or if I need to contact a doctor. I go to at least one doctor a week, and many weeks it’s multiple doctors, tests, or treatments. Dealing with pharmacy refills, health insurance, scheduling – it all takes a huge amount of time and energy.

I hope that people will listen more to their loved ones about what it’s like to live with a chronic condition, ask questions, and learn about their day-to-day experience. I believe in the power of empathy and believe that if you really make an effort to understand, you will. We all deserve to be seen, heard, and understood.

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Erica Lupinacci

Erica Lupinacci

Diagnosed since 2009

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.

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