MAC Region: J6 NGS
What is your diagnosis and when were you diagnosed? Psoriatic Arthritis, I was diagnosed my senior year of HS, I was 18
Can you talk a little bit about your experience with diagnosis? It was mostly confusing and overwhelming at first. I did not fully understand my diagnosis and was overwhelmed with the sheer number of pills I was suddenly taking and being tasked with having to give myself shots for the first time in my life. It was a really challenging adjustment to move away to college and handle all the new challenges of being away from my friends and family, and learning to adjust and juggle a chronic disease and my ever-changing health on top of the other challenges that coming with going away to college.
What is your greatest challenge in living with a rheumatic disease? Explaining when I am not feeling well despite looking “fine”. Getting people to understand how unwell I am feeling, and that it is not just laziness.
Describe something that keeps you hopeful in the day-to-day struggles with your illness. Because of social media, my advocacy work, and the wonderful folks at CreakyJoints, I have been able to connect with an amazing community of people who are going through similar health issues.
Why is advocacy important to you? After being diagnosed, I immediately got involved in advocacy. This has been a great outlet for me to deal with my diseases. I love being able to use to my voice to speak up for patients like me who cannot speak up for themselves. And I especially love that I feel like I am fighting back against arthritis on multiple fronts outside of just at my rheumatologist’s office.
