Our story this week comes from guest blogger, Leslie Rott, who is 31 years old. She was diagnosed with lupus and rheumatoid arthritis (RA) in 2008 at the age of 22. She holds a PhD in sociology from the University of Michigan and a master’s degree in health advocacy from Sarah Lawrence College. She is a professional patient advocate.
She is the creator and author of the blog Getting Closer to Myself (http://www.gettingclosertomyself.blogspot.com). She has also written for a variety of health sites including CreakyJoints, HealthCentral, MangoHealth, and Rheumatoidarthritis.net.
When I was diagnosed with lupus and rheumatoid arthritis (RA) in 2008, at the age of 22, I didn’t know what lupus was, and I thought arthritis was only something that old people got. When I first got sick, I was told that I could have nothing or I could be dying, so that’s a pretty wide spectrum of possibilities. Illness of any kind was not in my plans or my vocabulary, so it rocked me to my core and made me question a lot in my life.
Like so many, I struggled with getting diagnosed. I had symptoms many years before I was officially considered chronically ill. But in the absence of my body going haywire all at once, everything I dealt with was dismissed as acute health events. I was first told that I was “just constipated” or “just stressed” and that my symptoms were “all in my head.” But when I was in constant pain and could barely function due to extreme fatigue, it was clear that something was very wrong.
One of the most challenging aspects of these illnesses is not knowing how I’m going to feel from one day to the next, or even one hour to the next. They are unpredictable. So to go from being an on the go, never stop person, who always has a plan, is always on time, etc., having unpredictable illnesses is frustrating, to say the least.
For me, finding treatments has often been a challenge because some medications used to treat my RA have caused my lupus to flare. Thankfully, I’m currently on a medication regiment that seems to be working, which I am incredibly grateful for.
I’ll admit, after eight years of living with these illnesses, there is a part of me that is simply tired of dealing with them. But I can’t say I want my life back, because for better or for worse, this is my life.
One of the biggest “blessings” of these illnesses is the amazing people I have connected with. When I was first diagnosed, I felt completely alone. I was the only person I knew who was my age and going through what I was. I started my blog a week after my diagnosis. And in that way, I have never looked back.
While in graduate school, I became passionate about the experience of chronically ill students in higher education. My own experience taught me that graduate school is supposed to be about just that. You are supposed to live your life in isolation for the whole time you’re there. And if you can’t “hack” it for any reason, you shouldn’t be there. There were definitely times I thought about quitting, but I persisted and went on to get a PhD and a second master’s degree.
I spent the majority of my 20s, not only in graduate school, which was a choice, but being sick, which wasn’t. Your 20s are supposed to be some of the best years of your life, and that wasn’t the case for me, but I firmly believe that the best years of my life are still ahead of me.
Ph.D. Sociology, University of Michigan (2013)
M.A. Health Advocacy, Sarah Lawrence College (2015)
Thank you, Leslie, for sharing your inspiring story with us!
If you have a story to share with our readers about participating in a clinical trial, overcoming adversity, or living with a chronic condition, please let us know. We’d love to have you guest blog for us. Guest blogging helps others outside of your disease area learn about your struggles and discover your passions. We will help promote your website and social media accounts, as well as your favorite advocacy group. Contact us to get started sharing your story now!