Calling Out with GraceI try to approach life by considering others' perspectives, not just mine. Sometimes, though, I fail at this. As a rare disease...reactions5comments
Disclosing Rare Disease NeedsWhen living with a rare disease, how often do you disclose your needs? Daily? Weekly? Monthly? Living with a rare disease usually...reactions2comments
Rare Disease, Death, and No Clear-cut AnswersI have been fortunate to have my mother and grandfather to share my rare disease journey with me, as one of our...reactions2comments
I Thought They Understood: Living With An Invisible DiseaseRecently, I thought I had found a group of friends who would stick by my side, who understood what I was going...reactions27comments
Changing Scarcity Mindset to a Growth Mindset With Rare DiseaseI have been learning more about scarcity mindset, and it got me thinking about how common and easy it is to fall...reactions2comments
How to Be a Good Friend to Someone Living With a Rare DiseaseWhen I think about the characteristics I need in a friend due to my rare diseases, I mostly need someone who is...reactions4comments
Tips for Reducing Medical Appointment BurnoutWith a rare disease, it seems it doesn't take much for us to enter the world of becoming a complex rare disease...reactionscomments
How to Advocate for Yourself in Social Situations With a Rare DiseaseLearning how to advocate for yourself can be challenging. It's certainly a learning process, and it is often difficult to stick up...reactions3comments
How to Deal With Letdowns in Your Awareness EffortsAs I shared in a previous article, rare disease advocacy can include writing and requesting proclamations. Proclamations can be made by organizations...reactionscomments
When Living With a Rare Disease Negatively Affects Sex LifeSigh… I hesitated writing about this topic out of the initial shame I felt in even having gone through any of what...reactions5comments
The Power of Friendship in the Rare Disease Community: 3 Reasons to ConnectLiving with a rare disease can often make individuals feel isolated and misunderstood. However, in this vast and interconnected world, nobody should...reactionscomments
Reach for the Stars! Why Media Representation MattersRecently, I had the privilege of attending Portland Pride. The weekend was jam-packed with all sorts of events and parties celebrating the...reactions3comments
Managing Overwhelm: Giving Ourselves Permission to Take a MomentReacting versus responding. There's a difference between them that can be ignored or forgotten. Reacting is that gut punch reflex that tells...reactions2comments
Exploring Non-Drug Pain Management OptionsChronic pain, unfortunately, seems to accompany rare diseases too often. I began having chronic pain early on with my rare disease, and...reactionscomments
My Strategies for Living With a Rare Disease Long TermLiving with a chronic rare disease is not for the faint of heart. For most of us, there is no finishing line...reactions12comments
Benefits of Taking an Advocacy BreakSince becoming a rare disease mom, I have been relentlessly dedicated and solidly committed. However, more so now than ever, I have...reactions5comments
My First Rare Disease ConferenceRecently, I had the opportunity to attend a national conference for the rare disease that is narcolepsy. This conference had a plethora...reactions2comments
Grappling With the Possibility of Having Another Rare DiseaseMy mother has the same rare diseases that I have and among her many chronic health conditions, she also has worsening vision...reactions2comments
How My Therapist's Questions Help Me Manage Medical TraumaAs a person with a history of medical trauma related to my rare diseases, sometimes I put expectations on myself that are...reactions7comments
When You Don’t Want Advice on Your Rare DiseaseHow many times have you had to sit and listen to someone give you advice on living with your rare disease? Probably...reactions3comments
