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 […]
Living with Remission Guilt
My ulcerative colitis has been in remission for two years, at the time I’ve writing this. Sometimes it makes me feel guilty or as if my chronic illness story isn’t as valuable. Keep reading to hear my confession in today’s mini post and let me know in the comments if you’ve every felt this way. […]
3 Types of Chronic Illness Acceptance
This Crohn’s & Colitis Awareness Week, I want to discuss the topic of chronic illness acceptance. Personally, I believe accepting your illness isn’t something you do just once, but over and over again. And from personal experience, I think there are different types of acceptance, too. Let’s dive in! Three Types of Acceptance Over the […]
PSC Awareness Day 2019: Thank You to the Boy Who Called Me a Superhero
I attended a primary sclerosing cholangitis symposium in 2018, hosted by PSC Partners Seeking a Cure. During this weekend-long event, a young boy gave a short speech that changed my perspective on living with PSC. So in honor of PSC Awareness Day this year, I’d like to share the story about this speech that focused […]
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 […]
Two Things to do When Grief Disguises Itself as Nostalgia
If you live with a chronic illness, you’ve likely experienced some level of grief at some point during your health journey. I always used to think of grief as an overpowering black cloud of darkness and despair. And sometimes it is. Other times, grief can take on other strange forms. Recently, I had a moment […]