Comparing What It's Like Being Diagnosed With Lupus at Different Ages

People with lupus are most commonly diagnosed during their childbearing years, ages 15 to 44. I was diagnosed at 25, so I spoke to my amazing friend Josie about what her diagnosis was like at 15. Being 10 years apart when we were each diagnosed, we knew we had very different experiences.

On average, it takes six years to be diagnosed with lupus, which is what it took me. My symptoms started much earlier, even going back to high school…but they really picked up in college and graduate school, so I had six years of unanswered questions.

Josie on the other hand started experiencing symptoms at 13 or 14. The process for her took about nine months after seeing a handful of doctors and ultimately a rheumatologist. For me, I saw numerous rheumatologists and other doctors with no answers in sight. I actually was doubted by doctors and put on medication for anxiety and depression which is very common for people in the lupus diagnosis process. Finally I found my rheumatologist who diagnosed me after a rash indicated autoimmune activity.

For Josie, getting diagnosed at only 15, her parents became extremely overprotective. Being only a sophomore in high school, she focused mainly on homework and resting on the weekends. She wasn’t able to go out as much (which her parents preferred at first until they realized that not allowing her to do anything wouldn’t solve her health problems). Additionally, her friends didn’t understand what she was going through but granted, they were only 15, as well. Josie said, “I was given accommodations for unexcused absences, the ability to have extra time on assignments if I needed them, and taking tests at a later time if I were to miss a test or if I was unable to study for it due to a flare up.”

While I was diagnosed at 25 and in graduate school, my professors were very understanding but honestly my quality of life didn’t change drastically. My symptoms remained stable and the only difference was that I finally had a diagnosis, which was both terrifying and also a blessing. I had gone years being undiagnosed. Knowing that my symptoms and feelings were validated finally, even though it meant having a chronic illness, made me feel better in a way.

Telling people about your diagnosis can be difficult and scary. At first, I chose to just tell the people who know what I was going through. Slowly, I started letting more people in and talking about lupus became a coping mechanism for me. I started writing and speaking publicly about what I was going through to both help myself and ultimately help others not feel alone. Josie on the other hand only kept her family in the loop for a while.

Eventually, she became involved in the Miss America Organization and used lupus as her social impact initiative. We both became advocates for the Lupus Foundation of America; I have spoken for a pharmaceutical company numerous times, and Josie filmed a public service announcement and modeled in a billboard campaign for the LFA. For both of us, if you Google our names, our efforts towards raising awareness about lupus are some of the first things that appear. We are both transparent and open about our journeys and hope that by talking about our experiences we can help others who are struggling.

Advice Josie shares with others is: “Even though being diagnosed at such a young age is tough, it’s not the end of the world. Being so young allows you to change your mindset before you head into college and into your career. You have plenty of time to identify any accommodations you may need in the workplace and learn how to handle stress effectively to keep symptoms at bay. Maintaining a positive mindset about your health and the challenges you may face is key.”

I agree wholeheartedly and if you are diagnosed, know that you will be OK. It’s OK to let yourself be upset, but don’t get stuck there. The lupus community is one of the most supportive and empathetic communities I’ve ever met and I’m thankful to be a part of them. Reach out, ask for help and contact your local LFA chapter. We are all here to support you.

I’m so incredibly thankful to have met Josie. She has become somewhat of a “little sister” to me who is wise beyond her years and is going to do incredible things in her life. For more information about Josie and her journey, visit her blog.