Diagnoses at Different Ages

Being diagnosed with a chronic illness has varying implications depending on how old you are. Because I was diagnosed at 15 and my amazing friend Nicole was diagnosed at 25, we wanted to discuss our range of experiences as a result of being diagnosed with lupus at different ages. 

Nicole and I at the Lupus Foundation of America’s Evening of Hope Gala 2015

Nicole and I at the Lupus Foundation of America’s Evening of Hope Gala 2015

Despite the age difference, Nicole and I both presented undiagnosable symptoms before we were finally diagnosed with lupus. While I only presented undiagnosable symptoms for nine months before I was diagnosed, Nicole presented symptoms for several years, through the end of high school and into her undergraduate and graduate school careers. Receiving a lupus diagnosis can be difficult and often takes a long time because lupus presents itself differently in each patient. Nicole and I visited several doctors to reach a diagnosis, which is really common for people eventually diagnosed with lupus. Deep down, many people just know something is wrong and are determined to find out what it is. 

Being diagnosed as a teenager versus young adult presents different sets of challenges. Because I was in high school, my biggest concerns involved missing school and my loving yet overprotective parents. We didn’t really know what to expect with an autoimmune disease, and it did not help that my friends didn’t understand what I was going through either; after all, they were only 15, too. Nicole says being diagnosed was “terrifying, but also a blessing” because she finally had an answer to years of undiagnosed symptoms. However, she still dealt with anxiety and depression until she learned to accept her diagnosis. Even though she was in graduate school at the time, she says her professors were understanding and that she had good support from her family and friends. 

Telling people about your diagnosis can be scary and difficult at first. Nicole initially only told her close family and friends, but over time, she started to use public speaking and writing as outlets for how she was feeling. Sharing her story was a way to help others who were going through similar situations. Similarly, during the first year of my diagnosis, I did not tell many people because I was still getting used to the diagnosis and what it meant for me and my future. After I started competing in pageants, I decided I could use my platform to tell people about lupus and raise awareness about the disease. Now, Nicole and I are both outspoken advocates for lupus awareness and are active volunteers for the Lupus Foundation of America, which enables us to use our stories to help those newly diagnosed with lupus or living with lupus to know that they are not alone.

Nicole’s advice to twenty somethings newly diagnosed with lupus is knowing that “you will be okay.” It’s important to find supportive communities of people who are empathetic towards your situation. She says, “You’ll learn to not waste energy trying to convince people to understand and rather accept the help and support from the people who want to be in your life.” It’s all about adjusting to your new normal and hopefully becoming a more empathetic and understanding person because of your experiences. 

Being diagnosed as a teenager is also difficult because you are already experiencing so many changes during that time. I think it’s so important to find an amazing support team, but it’s also good to note that your amazing support team is probably not synonymous with your high school friends. Finding people with similar experiences to your own is so helpful because they know exactly how you need to be supported and encouraged. I found great joy volunteering with organizations such as the Lupus Foundation of America because not only was I able to help people in the same situation as myself, but also everyone I interacted with knew exactly what I was going through. 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.  

Nicole is an important member of my support system, and I am so lucky to have such an incredible friend who understands exactly what I’m going through. For more information about Nicole or living with lupus, check out Nicole’s blog, In The Loop! You can also find her on Instagram @_intheloop_!

HealthJosie Pearce1 Comment