“It’s Not Helpful When You Say That”

“It’s Not Helpful When You Say That”

"I can totally relate, I once had [thing]" -Anyone who finds out you have an autoimmune disease "At least it's not cancer" -Also anyone who finds out you have an autoimmune disease No one knows how to talk to you about being sick. Especially as you are just entering life with disease, or processing a new diagnosis, you'll often find that 'real talk' is bypassed for a combination of fluffy encouragement, unsolicited advice, and even some WTF moments. We like to think that most of this is well-intentioned (although unfortunately not all) but it often misses the mark because those around you are afraid to, or simply don't know how to talk to a sick person about being sick. Learning to guide the narrative means, in simpler terms, telling people how to have conversations with you. It takes learning on both sides, and it's something I wish I would have recognized and embraced earlier on in my disease journey. It cuts to the chase of...
Read More
When Your Cup Is Almost Empty

When Your Cup Is Almost Empty

  "You can't pour from an empty cup." - Norm Kelly Whatever lessons we've learned about self-care, community care, and compassion fatigue have been amplified by the 2020 global pandemic. The stress and anxiety, the loneliness, the mental effort it takes to process, and the unknown finish line have been brought to the surface for not just chronic illness patients, but most everyone in the land. I've been in a comfortable place with my own IBD for some time now, and I've stated repeatedly that when you're in remission, it's your opportunity (if not obligation) to give back to those who are where you once were. After all, when I was disastrously sick, navigating a new diagnosis, and learning to live a life incurable, I took what I needed, and I found it from those who were so able to give, even when I had nothing to return at the time. Now that we're collectively experiencing a similar-but-also-way-different health crisis, I've found myself on...
Read More
What I Want You To Know

What I Want You To Know

What I Want You To Know about Crohn's and Colitis To all the caregivers, bosses, classmates, and friends. To all the boyfriends and best friends, to the girl that I see at yoga class. I want you to know this: I have IBD. It stands for Inflammatory Bowel Disease. (It does not stand for Irritable Bowel Disorder, or anything else, and it’s not the same as IBS). If you know me, you probably know this. I talk about it frequently. I volunteer for various organizations. I have my elevator speech worked out, and I can rattle off definitions, facts, and statistics in my sleep. But do you know what that means to me, and the other patients who live day in and day out with IBD? Do you know that it’s not just some medical jargon that I apply to my digestive system? It’s so much more than trips to the toilet and chronic fatigue and bi-monthly infusions and doctors’ visits. This is my life. We all know...
Read More