In honor of Rare Disease Day today, I’d like to share how I emotionally cope with living with the rare disease, primary sclerosing cholangitis (PSC) journey. I also have written a list for you at the bottom of this post sharing my top three favorite rare disease organizations! What is Primary Sclerosing Cholangitis? I live […]
How Personality Type Can Correlate with Self-Advocacy
Who else is super into the Enneagram Personality Test!? I’ve been really diving into it lately and made some interesting comparisons between my personality type and the way I advocate for myself as someone with chronic illness. Before I dive in, I’d love to know what Enneagram Type you are! Let me know in the […]
My PSC and Vancomycin Advocacy Plans and How You Can Get Involved
It took me ten months to find a doctor who would prescribe me vancomycin and one year to finally find a hepatologist who was willing to help me pursue an official PSC diagnosis via liver biopsy. This is a long time, and I know many others have waited much longer. It doesn’t have to be […]
Why I Don’t Identify with the Phrase, “My Chronic Illness Doesn’t Define Me”
There’s a phrase I hear quite often in the chronic illness community. This proclamation, for many, is one that summons strength, brings comfort, and conjures an inner resilience. The phrase is, “My chronic illness doesn’t define me.” While I appreciate the sentiment of this phrase, it doesn’t resonate with me. In this post, I explain […]
When Your Diagnosis Isn’t About You Anymore (And Why It’s a Good Thing)
Celebrating my five-year ulcerative colitis diagnosis this year, I had an epiphany. I realized that my diagnosis isn’t about me anymore. I’d started out sharing my story to find community and emotional healing, and now I share my story to help others. If you find yourself in a similar boat, keep reading to see why […]
Accepting Your Chronic Illness Isn’t a One-Time Thing
Happy September everyone! This month is very special to me because it’s my five-year ulcerative colitis diagnosis anniversary! In honor of this, I’m doing a five-part series of the five most significant lessons this chronic illness has taught me. Today’s topic is about why accepting your chronic illness is not a one-time thing. Accepting Your […]