Providing Answers, Support and Hope in the Southeastern US
Turning Pain into Purpose: How Caitlin Uses Fashion to Raise Lupus Awareness
When were you diagnosed with lupus? How long did it take you to get diagnosed?
When where you diagnosed with lupus? I was diagnosed in 2018, two weeks after I got a flu shot. The pain from the injection site didn’t go away; instead, it spread throughout my entire body. It felt like every millimeter of my skin, joints, and bones were being stabbed with sharp knives. I couldn’t do anything without wincing in pain, including sitting and sleeping. I couldn’t so much as get a shirt over my head. I thought I was dying. I already had a rheumatologist because I had been searching for what could be wrong with me for a few years before. Until the flu shot, I was generally immunocompromised, but with no specific diagnosis. After the flu shot, I was diagnosed immediately. The lab work lit up like a Christmas tree, according to my rheumatologist.
What were the symptoms that finally led to your diagnosis?
In addition to excruciating pain throughout my entire body, I also got severe migraines from even mild light exposure. I had to start wearing dark sunglasses and a baseball hat everywhere I went. My eyes were bloodshot for at least six months until my medication started kicking in. I had severe swelling in my legs, abdomen, hands and feet. I used to sleep with rings on, but during that time, my hands were so swollen that I couldn’t get one off. I used butter, soap, oil, and water, but I still took off some of my skin during the removal. None of my shoes fit. I had severe brain fog and I got confused and disoriented when speaking or reading. I couldn’t even read an article.
How did you feel when the doctor told you that you have lupus? Did you know what lupus was?
I felt elated. “You have lupus” is MUCH better than “you are dying.” I cried tears of relief because it meant that there would be a solution. I was put on a rigorous course of medication and I changed my lifestyle. The only thing I knew about lupus before that diagnosis was that one of the contestants on “America’s Next Top Model” had it—I remember during the season that her hair was falling out in clumps. The reality of lupus being incurable hadn’t set in yet. Being chronically ill is so much better than imminent death, at least in theory. That excitement lasted about six months. That’s when reality set in.
How did you first become involved in raising awareness for lupus?
I regularly need to tell people that I have lupus in order to get accommodations or to excuse otherwise inexcusable social behavior. That might mean leaving a private dance class because the lights are too bright. It might mean moving tables at a restaurant because of an overhead light. When I tell people I have lupus, they don’t really understand what I mean. As I began explaining the disease to everyone I encountered, it occurred to me that I should do so on a larger scale. The responses I often got were, “but you look so healthy” or “but you’re so pretty.” I looked at my Instagram page and thought, “hmm, this could be misleading without context.” That motivated me to start providing context. Yes, I’m at a party, but here are the things I had to do to accommodate my illness while I was there. When no one understands you, you begin to feel invisible. I want to make other people with lupus feel seen.
What inspired you to get involved and start a fundraiser?
I was motivated by the lack of awareness, but also by a desire to approach advocacy in a way that felt true to who I am. Fashion has always been a form of self-expression for me, especially when living with an invisible illness, where what you present to the world doesn’t always reflect what you’re carrying internally. Bringing fashion and philanthropy together felt like a natural extension of that duality, creating fun partnerships that are also deeply purposeful. Fundraising became a way to transform personal experience into collective impact.
What does it mean to you to bring your community together for this cause?
I love my community, so watching people I know engage with lupus has been incredibly meaningful. The receptiveness of my friends and the fashion community has shown me that if I continue spreading awareness, things might actually change. Living with an invisible illness can be isolating, so bringing people together, especially through something as expressive and unifying as fashion, creates a sense of visibility, belonging, and shared understanding. It’s a reminder that even deeply personal experiences can be held collectively, and that community has the power to turn awareness into something lasting and meaningful. I feel so fortunate to have the support of friends, but also fashion brands that have supported my journey to raise awareness and funds including: Balmain, Pucci, A.L.C and others.
Why should others get involved with raising lupus awareness?
Lupus affects millions of people, predominantly women, yet it remains widely misunderstood, often impacting those who suffer quietly without visible signs. Getting involved is not only about raising awareness or funding research, but about cultivating empathy and human connection, taking the time to understand experiences that aren’t immediately visible. Even small efforts can help someone feel recognized and supported, while contributing to a broader shift in awareness and care.
What advice would you give to others trying to start their own fundraisers?
Pay attention to the aspects of your existing life that have room for fundraising. If you don’t spend a lot of time in the fashion space, don’t do fashion fundraising. If you’re in fitness, implement fitness. Be true to yourself because people are drawn to authenticity and intention. Focus on building a thoughtful, engaged community rather than striving for perfection from the outset. And don’t underestimate the power of starting small. Impact builds over time, and you will naturally find people who are inspired to champion both you and the cause.
To support Caitlin's efforts, donate here.
Follow Caitlin's lupus journey on Instagram @misscaitlincollins and Tik Tok @misscaitlincollins