PATIENT STORY STAR SPOTIGHT

By Rosie Chapman

Like other lupus patients, my story is a turbulent one. After being brushed off by my doctors, I was finally diagnosed at the age of 23. My diagnosis took about a year and a half but I was quickly referred to a wonderful rheumatologist who managed my symptoms. I could tell you all about overlap conditions, treatments, and generally not being believed, but for lupus patients, these are common occurrences. I want to reflect on something else that has been just as big a part of my story and the reason why I have been successful within this organization that I’m so grateful for.

The thing many of us don’t often speak about is the mental health aspect of being chronically ill. No, I’m not talking about the things they try to diagnose you with when you have physical symptoms. I’m talking about the things that happen as a side effect of being chronically ill. My lupus changed my life a lot. I had to adapt my life to be able to live with lupus. I had a husband and other relationships who couldn’t cope with the fact that I was chronically ill. I had “friends” who disappeared because they couldn’t, and didn’t want to try to understand why my life looked differently. Some of the ways I identified myself changed dramatically. Due to all of these factors on top of the physical pain and the toll of living with lupus caused me to be profoundly depressed for a few years. The type of depression where you don’t leave your bed, don’t speak, don’t smile, and it’s difficult to even shower or be functional at all. I found myself not managing my physical conditions, because I no longer cared if this disease just removed me from the world.

I had lost my light, my spark, my identity. I found myself at the bottom of a very dark hole with no tools and no idea or even desire to try to get myself out. I lived this way for about three years.

Then something strange happened. I decided to download TikTok during the pandemic because, honestly, I had nothing else to do. I was too sick and too depressed to even leave my home or maintain any relationships. At this time I had no self-confidence, no friends, no desire to do anything, speak to anybody, or interact. I knew I’d never post or interact with others. Then one day, I accidentally clicked into a live stream and the people there were kind and talked to me. Here’s the really strange part: nobody expected anything from me but to just be myself. I started meeting people on the app and they encouraged me to start posting in my own time and in a way that I felt comfortable. I was able to do this from my bed, couch, or anywhere else my disease or mental health may have put me at the time. I found a community for me, a way to be useful when

I thought there wasn’t one, and I found a whole new life. Fast forward to almost three years later and the time this fundraiser is taking place. I’ve made hundreds, if not thousands, of videos, gained a small following, and met so many amazing people. I’ve done educational content about lupus, mental health, and honestly done a lot of silly things just to make people laugh. I found a place where I could just be me. I met the love of my life on Tiktok. Which, just to be clear, I don’t recommend - it usually doesn’t work out. More than anything, I found my light again. All of my success with raising money for an amazing organization like the LFA was directly because of that silly, weird, annoying, amazing app. There will be people attending Columbus’s Walk To End Lupus Now® representing our team “Chronically Awesome” from NC, PA, Northern Ohio, and from the Columbus Area. We have team members from all the aforementioned states as well as Missouri and Texas. We’ve had donations from all over the country as well as England! All this as a direct result of being myself and telling my story on an app that saved my life.

Saying I’m grateful isn’t enough. The point of me telling you this long and kind of strange story is to let you know there is always hope and sometimes it comes from places you’d never expect. I never could’ve imagined I’d have the beautiful life I have now because of an app. I never could have believed I’d have created a small mental health network called the BBS, or Broken Brain Squad, who’ve become like a family of people who support each other from all over the country. None of these things would’ve been possible if I hadn’t just reached out and told my story. Although we all have to pay close attention to our physical health, don’t forget about your mental health. I’m beyond grateful in my darkest times that a bunch of strangers on the internet reached in and shone a light and helped me get out! Trust me when I say, as lost as I was, if I do it, I guarantee you can too!