Viktoria Cupay: Lupus Warrior, TikTok macro-influencer & Public Health student

 In Links to Lupus News, Story Sharing Project

By Viktoria Cupay, Beach Park, IL
What type of lupus do you have?
SLE and Lupus Nephritis

When were you diagnosed with lupus?
September 2016

How long did it take for a correct diagnosis?
2 years

Were you misdiagnosed first?
Yes, doctors diagnosed me with pleurisy and sent me home with pain killers. This happened twice. It took three emergency room visits and two different hospitals to properly diagnose me.

How has your life changed since your diagnosis?

I feel like I had to choose a different path in life because of lupus. I had to drop out of school twice because of my flare-ups, but that did not stop me from going back to school. I had to switch my career plans from nursing to public health due to complications from lupus. There are many things I cannot do because of lupus.
For example, I only do some of my chores in a day because I get tired easily. My choices are limited by it.

How has your diagnosis affected your family and friends?
I am fortunate to have the best support system. They are understanding of my struggles. Although when I was recently diagnosed, some of my friends did not understand why I had to cancel hanging out with them with such short notice. It is hard to explain that I might be perfectly okay today, but my body could totally feel different the next day.

Has a lack of public awareness about lupus affected your quality of life?
Yes, having an invisible illness is a struggle. Most people do not know what lupus is. People do not understand that although I look perfectly fine on the outside, my body hurts, and I am tired most of the time. The lack of public awareness of lupus can make people underestimate my struggles.

Is your employer supportive of your diagnosis?
I am currently not working at the moment as I choose to focus on my education. But when I was working at an assisted living facility, my manager was accommodating of my situation. I am fortunate and I acknowledge that this is not the case for everyone.

How did you find the Lupus Society of Illinois (LSI)?
I saw a billboard of Lupus Society of Illinois on the highway and found their page through Instagram.

How has the LSI helped you cope with lupus?
I have raised awareness about lupus through my personal social media. Through LSI, I feel like I can raise awareness in a bigger scope, not just to my family and friends, but the whole of Illinois. It empowered me and gave me more voice. Having a community and support system, like LSI, aside from my loved ones inspires me to keep going.

What would you want the world to know about lupus? Why?
Living with an invisible illness is a struggle, because as lupus warriors we might look perfectly okay on the outside, but our bodies are in so much pain. Lupus has no cure as of today. The uncertainty of this disease makes it hard for me to make long-term plans. One day I might feel fine then the next day, I might have a flareup. Living with lupus is a constant battle. I had to drop out of college twice due to my lupus flare-ups. I have multiple doctors and multiple doctor appointments each month. A lupus patient is most likely to get diagnosed with other autoimmune diseases as well.

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