“My name is Emily (@healmewholeheartedly) and I am a 32 year-old living with Sjögren’s Syndrome, FSGS, and Pulmonary Arterial Hypertension (PAH). I’ve known chronic illness my whole life, and nothing different. I believe that is where my strength and stamina come from. I was forced to be strong from the beginning, and had no other option.
When I was 4 years old I was diagnosed with Juvenile Rheumatoid Arthritis (JRA), which later morphed into Uveitis and subsequently, Sjögren’s Syndrome. In a way, I was lucky to get these diagnoses as a child, because I still had innocence and hope. I didn’t see myself as any different from my peers and I kept that mindset into my adult years.
I am definitely a cautious person, but I also like to push boundaries. I am always making goals and striving to achieve them, chronic illness and all.
Living with chronic illness involves no other option but personal sacrifice. With my most recent PAH diagnosis, I was forced to slow down and let go of many goals. I had to figure out how to still be me, without everything that once made me who I was. It was devastating and still a struggle, but it taught me so much more about myself that I never knew. I learned to see the world through a different lens. I learned to see people differently and appreciate so much more in life. I decided to share my story, because so many people have bravely done so before me. Knowing you are not alone is much more powerful than any medication.”